Stories of children living with transverse myelitis

Our daughter was 6 months old when she was diagnosed with TM. During the morning of the onset, she had been her usual self, happy, rolling on the floor, rocking back and forth in a crawling position, and sitting up by herself. After lunch, she became irritable and fussy; she nursed and fell asleep in her mother's arms. We continued to rock her and comfort her through the afternoon. We noticed something was not right while changing a diaper. Her arms and legs were limp and she was looking at us. She was able to move her head from side to side, but there was no movement from her neck down. Our pediatrician did not understand what was going on when we spoke to him over the phone, but he did agree that she needed to be seen. We were not aware of any previous illness such as cold, flu, or anything else. She did have a mild diaper rash a couple of days before that had healed. Our daughter had double hernia surgery at four months old with general anesthesia and a caudal block. She also had immunizations at four months of age.

At the hospital, the emergency doctor examined her. We were asked many times about how this had happened to her, making us feel very frustrated and guilty, like we had done something to her. We knew that our story was very vague. Finally, the emergency doctor consulted with a neurologist and a MRI was ordered and done. They had to intubate and sedate her for the MRI. Within six hours of entering the hospital, the neurologist was telling us that our daughter had TM, which was completely unknown to us. She was admitted to the Pediatric Intensive Care Unit for high doses of steroids and a dose of immunoglobulins. When we saw her, she was on a respirator, had two intravenous lines, and a foley. She stayed on the respirator for three days. The pediatric doctors and the neurologists ran many other tests trying to determine the cause of her illness, which ended up not telling us anything. We were told that the cause was autoimmune, something within her immune system attacked her spinal fluid. Initially, her MRI showed the area of swelling in the Cervical 4-6 and then continued down her entire spine. A week later there was a mild decrease in swelling when compared to the first MRI. We saw her first movement within the first 48 hours when she lifted her left arm up and down.

On the fourth day, she developed a urinary tract infection that required antibiotics. A spinal tap was done a week into the stay. The doctors expected to see signs of the infection but only found normal fluid. She remained hospitalized for 18 days in the pediatric intensive care unit. Two days before we came home, she had a cookie swallow done. She was able to chew and swallow normally so she started to eat some baby food and take her bottle again. We had to catheterize her two times a day, because her bladder did not empty completely. The medications prescribed on discharge were prelone (steroids), suprax (preventive), and oxygen. The equipment prescribed on discharge was an oxygen concentrator (nasal cannula), suction supplies (weak gag reflex), a pulse oximetry monitor, bladder catheters, and bilateral hand and feet/ankle splints.

She started outpatient rehabilitation three times per week for occupational and physical therapy. We saw very slow improvement. We tried to motivate any kind of movement through play and toys. At one point, we also had the Early Intervention Program come into our home for occupational and physical therapy. We felt that this was too many therapists with too many opinions. So we concentrated on the center for therapy. Our goal and hope is for her to have a complete recovery. Even though it's been two and a half years, we still believe this to be possible. She presently has great upper body strength. She can crawl dragging her lower body without difficulty. She can get into the proper crawling position with belly off the floor and knees under her hips, yet only rocks in that position. She feeds herself with either finger foods or feeding utensils. She sits on a bench with usually one hand down to stabilize herself. We do see muscle activity in her legs. Her legs were floppy up until two years of age (post one and a half years). Then we noticed she had her knees flexed in while sleeping and they were hard to relax. With the guidance of therapists, we made nighttime cloth leg splints to keep her legs extended. She can stand with minimal help at a bench for a brief period of time.

Presently, we use the following equipment for her daily routine; electric stimulation for her upper legs, air splints for her legs while she is standing, ankle/feet splints while she is standing or sleeping, night-time cloth leg splints, day-time hand splints to help keep her fingers extended, night-time resting hand splints for muscles/joints to relax, catheterize her three times per day, and a pony gait-trainer to get her upright several times per day. We are researching the type of wheelchair that would be best for her, and looking for out-door toys that are hand pedaled to give her the independence that she needs.

Her therapies consist of occupational therapy two times per week and physical therapy three times per week. She started hydro (water) therapy at 32 months old and equestrian (horseback riding) therapy at 35 months old. She loves them both and seems to be doing better in each activity.

Presently, she takes one dose of bactrim daily to prevent bladder infections. She also takes one dose of detrol daily to help her bladder to expand and hold urine. She sees a urologist one to two times per year. She sees a neurologist one time per year. She sees her pediatrician on a normal schedule, although our visits may be longer and we request extra time.

It has been tough as parents to see our child so ill with no definite reason why and so many unanswered questions. And not being sure what her future holds. Where will we be? Who will take care of her? In addition, trying to care and love siblings that are too young to understand why their sister does not walk or run. It's been a long two and a half years.

We are not sure how we got through the last two and a half years, but we did. We talked a lot, cried a lot, and hugged a lot. We have had good days and bad days. We still hope and pray for complete healing to take place. Yet, we do want His will to be done. Our three-year-old is a very happy and loving child and we thank G-d that she has the mind of a three-year-old.

It was Saturday, October 9, 1999, a day our family will never forget. It was on that day that our daughter, Rachel, woke up and could only move her neck. She had exhibited cold symptoms for two days prior and we felt she was probably coming down with an ear infection (she had two previously) so we had planned on taking her to the Pediatrician on Saturday morning anyway. Rachel looked very sick, and had a high fever and very weak cry when she woke up, although she was alert and responsive. We were obviously very concerned and called her Pediatrician right away. When we took her there about three hours after she woke up, he did find a double ear infection and gave her two shots of antibiotics, one in each leg. She didn't cry when she got the shots (which, of course, concerned us) but the doctor felt that her muscles shut down due to the flu. After all, you don't go to bed with a cold and wake up with a neurological disorder, right?? Anyway, that was the beginning of such sadness and mourning for our daughter who had been developing so normally up until that day. She was just beginning to lift up a little on her knees and could pretty much sit up without falling over when all of that changed literally overnight last October.

We took her back to the Pediatrician's office the next two days and they continued with the shots of antibiotics. She didn't cry for any of them. Rachel did improve and began to look better and during these three days, she began to move her arms, first the right one and then the left in large sweeping movements. When she showed no signs of leg movement by Tuesday, the doctor arranged for us to go to the children's hospital so the large staff of pediatric specialists could adequately access Rachel's condition. We entered through the emergency room and left 18 days later. We were asked a lot of questions about Rachel's immunization history and she did, in fact, have immunizations for Diphtheria, Acellular Pertussis, Tetanus (DtaP3) and Haemophilis Influenza B (HIB) on September 23, 1999, a little more than two weeks prior to her onset of TM. Even today, her Neurologist cannot completely rule out some connection. At the hospital, they performed a Cat Scan, a lumbar probe and then an MRI of the brain and spine. During this time, they transferred Rachel to the Pediatric Intensive Care Unit as a precautionary measure since her respiration was weak and they wanted to watch her more closely. They wanted to make sure whatever she had would not eventually affect her ability to breathe on her own. Thankfully, we were only in the Intensive Care Unit for two days. On Saturday, one week after the onset of her TM, we were definitively told of Rachel's diagnosis and she began intravenous steroid treatment. We were told of her diagnosis on this day only because Rachel's MRI showed a couple of other things that they had to rule out as having any contributory affect. They found swelling at C3-C7, a small thoracic syrinx (fluid filled cyst) and they also said there was a decreased amount of white matter in her brain for her age. This was all so scary!

During Rachel's hospitalization, she had therapy everyday and she showed rapid improvement in her upper extremities, showing increased purposeful movement and strength. Also at the hospital, she periodically wore custom-made hand braces (to help her fingers straighten out) and custom-made foot braces (to prevent her toes from pointing downward all the time). Her trunk was weak and she was not able to sit unassisted or roll over. It was also determined she was retaining urine and so she had to be catheterized every six hours and this ultimately resulted in a urinary tract infection. This condition did reverse itself while in the hospital and we were able to go home with her urinating on her own. The Pediatric Urologist indicated her bladder was now considered overactive and she dribbled urine frequently. Thankfully, Rachel only needed an enema once and we continue to watch her bowels and monitor them through diet.

We were very happy to go home, having spent a lot of time away from our two sons. We arranged to have Occupational Therapy two times per week and Physical Therapy one time per week on an outpatient basis. On November 1st we started our outpatient therapy and continued to see improvements at every visit. This was very encouraging, but by early December, the progress had slowed, although it was still there. At first we were told by her Neurologist that she would be seriously concerned if Rachel was not moving her legs in three months and this made us extremely anxious. We watched her constantly for any sign of new movement. While in the hospital, Rachel could move her legs stiffly from the hips, however, after we got home, we would notice very slight changes or frequency of movement. We would notice this more when her upper body was stimulated or when she was sitting on a hard surface. It was nothing regular or predictable, but it was wonderful to see, just the same.

Rachel is now a little more than 13 months old and she has had Transverse Myelitis longer than she hasn't had it. It really is hard for us to remember her any other way and we really don't have much memory of her being mobile at all since she was just beginning this stage of development when she got sick. She now goes to Physical Therapy two times per week and Occupational Therapy one time per week since she has shown some increased leg movement and considerable upper body improvement. Her trunk is still weak although it has improved with therapy. Her arms are at 100% strength and she can get around the house pretty quickly by doing the commando crawl. We have noticed irregular movements in her hip flexors and quads and we are working hard at trying to capitalize on that. We do a lot of sit to stand exercises and have recently begun to do electrical stimulation on her back and lower extremities. Rachel cannot roll from her back to her stomach without assistance so we are working on developing the muscles to help her do that so she doesn't feel so trapped. She gets very frustrated being on her back unless she is very tired. Rachel stands in her standing frame for approximately one hour each day in 15 - 20 minute increments which should provide her some additional weight bearing which will help in her structural development. We also periodically do warm water pool therapy and she will be fitted for dynamic AFO's in a couple of weeks. At this point, Rachel spends a lot of time at therapy and at home we work on a large therapy ball and do a lot of stretching exercises to keep her tone good so that if the signals do get through, her muscles are loose and ready to move.

Thankfully, throughout this, Rachel is not in any pain which many people experience with TM. She is a very happy baby and does not know that anything is amiss. It is difficult to assess everything about her condition because she is non-verbal, but we do know that she has some feeling in her legs. She had an ear infection just a month ago and they gave her a shot of antibiotics in her leg and this time she wailed! Rachel has recently begun to scratch her legs quite a bit and we feel this is in response to increased sensation she is getting in her legs.

We don't know exactly where this uncertain road will take us, but we do know it will take a very long time for Rachel to recover whatever function she will eventually have. The waiting and the uncertainty is so very difficult, but we continue to be hopeful for Rachel's future. We have to be. We know at this point that she would be able to live independently and we are so grateful for that. As we wait, we surround her with a lot of love and encouragement and, hopefully, someday our prayers, that one day Rachel will walk, will be answered.

I am the mother of a child diagnosed with transverse myelitis (TM) and I would like to share my experience with you. My son was 7 months old when he was diagnosed with TM. He could not tell me what hurt where or how much. I thank G-d for my "mother's instinct."

My son, Dillon was born in June 1997. He was 7-½ weeks premature and weighed 5lbs 7 oz. He was healthy as a horse and slept through the night at 4 weeks of age. He only cried when hungry. He was smart, active and an angel!

On Thursday, February 5, 1998, we began our day like any other, only I noticed he was unusually fussy. He didn't seem to have any cold symptoms and he ate a good breakfast, so I chalked it up to a "bad mood." Throughout the day he became lethargic and extremely whiney. By dinnertime I was becoming increasingly concerned. His father came home from work and agreed that Dillon was "not right." We phoned our pediatrician who said that as long as he was eating and not running a fever, vomiting or having diarrhea, we shouldn't panic. He said Dillon could have an ear infection or is cutting teeth.
I remained by my son through the night, checking his temperature and basically worrying, as he cried out in his sleep. My husband got up at 5:30 AM to go to work, at which point Dillon's temperature began to rise. I then called the pediatrician again, and was told to bring him at 8:00 AM that morning. I made him a bottle and immediately noticed that he was unable to hold it himself, a skill he'd mastered several months previous. He was moaning. I bent over him and begged him to "touch mommy's face" or "pull mommy's hair," as he so loved to do. He simply stared at me, his right arm drawn up to his chest, his left arm stiff at his side.

A wave of panic swept over me and I called 911. When the paramedics arrived, his temperature was 104° and his breathing labored. They life flighted Dillon to a trauma hospital. I was forced to drive the 50-minute drive alone, as they refused to let me accompany Dillon on the helicopter.

My parents and my husband arrived at the hospital before I did. When I saw my son lying on that emergency room table, I knew we were close to losing him. I had told the medics and the 911 operator that I suspected Spinal Meningitis, an illness I had experienced first hand at the age of 15. The doctors in the emergency room were milling about, most of them residents, trying to determine where to begin in reaching a diagnosis. By 12:00 PM Friday, February 6th, they had done a CT Scan and had taken him into x-ray twice. Dillon's breathing was becoming increasingly labored and he wasn't moving a muscle.

Frustrated and scared, I finally demanded they do a spinal tap because I knew he didn't have anything wrong with his bones. They agreed and then made arrangements for a room in ICU. Upon arriving at the room, I noticed that we were directly in front of the nurse's station and was somewhat thankful to have them so close. As we settled in the room, I also noticed that there were cameras in our room and that our room was the only room in ICU being monitored. I still didn't catch on.

That evening, the doctor arrived to give us what we had hoped would be a diagnosis. He began questioning my husband and I about the previous day's events, wanting to know if Dillon had been dropped, hit or picked up by his arms… and it hit me…they suspected abuse. I became angry and frightened all at once. I was an at-home mother who's life revolved around her child. I knew there had been no physical abuse. It also dawned on me that they had been running him back and forth to x-ray and doing every test possible to prove physical abuse instead of finding the source of the problem. I was fearful my son would die, and that if he didn't, they might take him away from me.

The doctor said Dillon had "nurse-maid's" elbow and that they thought an infection had set in as a result, causing high fever and paralysis. I became irate and told the doctor that I knew he was wrong, that I suspected meningitis.

That night, our first night in the hospital, I held my son in my arms and rocked him, all the while being watched closely by the nurses and cameras. I was afraid, tired and frustrated at the obvious steady decline of my son's health. At some point a nurse came in and told me that the spinal tap had not revealed meningitis, however, the protein levels in the fluid were suggestive of some other problem. They had a neurologist arriving at 8:00 AM the following morning from the local children's hospital.

When the neurologist arrived, he began examining Dillon. He seemed worried, and after ten minutes of thoroughly examining Dillon, he told me to begin gathering our belongings because he would have an ambulance arriving to take Dillon and I to the ICU at the children's hospital just down the road. He told me that Dillon did not have "nurse-maid's" elbow and that he was scheduling Dillon for a MRI.

As promised, we were taken to the children's hospital where we waited several hours for the MRI, as it was Saturday and a radiologist had to be called in. They put Dillon on a feeding tube, a breathing tube, antibiotics and other monitoring equipment.

I was exhausted and petrified, but at least I felt as if my son was getting the treatment that he needed. About 10:30 PM that night, the neurologist arrived and told us that the MRI confirmed transverse myelitis. We had never heard of it. He gave Dillon a 30% chance of surviving the next 72 hours because the disease had paralyzed him from the chin down and there was already some brain swelling. He said that if Dillon did survive, there was only a 40% chance he'd recover use of his arms and legs. His breathing was labored, but they wanted to keep him off of a respirator, if possible. They began steroid treatment to combat the swelling and hoped the steroids would work before he was unable to breathe on his own.

That night was the worst night of my life. The doctors told me to go home and get myself some belongings. They told me to get things of Dillon's that would make him feel more comfortable, as he would be staying in the hospital a while. He said it would be a "biblical event" if Dillon were out of ICU in less than two weeks. I didn't want to leave him, but the doctor insisted that he wouldn't let me stay in the room with Dillon, because I had already been up with him for two days. Walking out of that room and leaving my son with my sister and mother in that hospital was the hardest thing I ever had to do.

We went home and gathered my things and Dillon's and tried to get a couple of hours sleep. We were up again at 5:00 AM and ready to get back to our son. I walked out of Dillon's nursery with a bag full of toys and clothes and pictures…when I saw a plaque hanging from the wall that I'd received as a shower gift. It read:

Now I lay me down to sleep, I pray the Lord my soul to keep, watch me safely through the night and wake me with the morning light.

That plaque remained above Dillon's hospital bed for the duration of our visit.

Dillon's recovery was underway. Within five days he was released from ICU and moved to a regular room where he remained for eight days. He was released from the hospital one day shy of two weeks and he had already begun to move his arms and head.

Dillon will be three years old in June. At 2 ½ years old, he is still unable to walk, however, he attends two sessions each of speech, physical and occupational therapy per week, in addition to his specialist's appointments. He has recently tested at age level in his fine motor skills, with some problems, but some advanced skills. He has an above average vocabulary with his only speech problem being the inability to pronounce certain sounds properly due to a weakness in his tongue. He is "socially" advanced for his age and has a delightful and determined personality. He has recently taken his first steps with the use of a walker and has become good enough at it that we were able to get approval to order one for home use.

The opthamologist said there were no long-term effects on his eyes, although the disease could cause gradual blindness. The urologist says he'll be able to control his bladder and bowels normally. The neurologist has warned me to be "cautiously optimistic" and that Dillon is writing his "own book" in his recovery.

In two years time we have been told Dillon would never walk; then he'd never walk fast; that he'd never run; and now they are shrugging their shoulders and letting him decide what he's going to do.

The past two years have been emotionally draining and rewarding. I am so proud of my son's determination and I feel so lucky that the right doctor was able to make the correct diagnosis.

We have a long way to go in his recovery, however, we feel blessed to have come this far. Since the ordeal, I have often wondered what would have happened had Dillon's neurologist not been well informed of TM and I wonder how many children have been misdiagnosed as a result of uninformed physicians. How many parents have been blamed for symptoms related to this little-known disease? What can I do to educate people?

My granddaughter, Kristen, has Transverse Myelitis. I would like to tell Kristen's story.

Kristen had her six months baby shots four weeks before her illness and the flu two weeks before her illness. The morning of January 21st 1998 at 7:30, Kristen's mother, Teresa, took her to the babysitter and went to work. Kristen appeared fine. Each day after my daughter, Heather, got out of school, she would pick Kristen up from the sitter's. When Heather picked Kristen up that day at 3:30 PM, she immediately noticed that Kristen did not raise her arms to greet her or move her body when she put her in the car seat. Heather called Teresa at work. Teresa immediately came home and took Kristen directly to a local hospital. Due to Kristen's age and condition she was immediately flown to a children's hospital. Kristen had no movement from her neck down.

Upon arrival at the children's hospital, Kristen was initially diagnosed with Guillian Barre Syndrome and treated with immunoglobulins. Three to four days later, after an MRI, this diagnosis was retracted and we were told that an unknown virus had attacked her spine destroying nerves on the inside and outside of her spinal cord. Her immune system had also become confused and attacked her body. Kristen had been on a ventilator since her arrival at the hospital and now was given large dosages of steroids. Kristen spent the winters of 1998 and 1999 at the children's hospital. Thankfully, this winter she has not been in the hospital at all. Kristen's diagnosis for the future - she can be functional.

Until this occurred in January of 1998 Kristen appeared healthy. She rolled everywhere, sat up and had even begun to attempt to crawl. To date, Kristen has moved every part of her body except her left hand. She will roll over, although she doesn't do so without encouragement and it requires a lot of effort to accomplish. She will sit by herself if you place her in a sitting position, although she slumps forward (this is improving). Kristen does not crawl, stand or walk. She feeds herself fairly well using her right hand for grasping and her left hand for support. Kristen's right hand has loosened from a tight fist and she has fairly good control of it. Her left is very floppy. She is extremely active with her arms and can move her legs, although she does not do so with much frequency. She is very weak and can only lift light objects.

Kristen's mother has begun to try to potty train her. Kristen will use the potty, but we don't see a controlled function. Bowel movements are extremely painful for her.

Kristen is a delightful child. Last winter at the children's hospital, she learned all her nurses' names so she could get extra attention! She is very forgiving; even after painful medical procedures, she is still affectionate with her doctors and nurses. And she is very loving. Because she is so young, we are hoping to see improvements in her condition as she grows. At age two she could recite her ABC's, count to 10 and sing several songs.

We feel blessed to have our Kristen and pray that a cure will be available for Kristen and everyone affected with Transverse Myelitis.

We are French thus, first of all, we must ask your indulgence for the broken English we are writing in. We live in a little town in the west of France. We have two daughters. We live in a very beautiful area with the sea nearby and we could have been perfectly happy if Transverse Myelitis didn't come and turn this quiet stability upside down. Myelitis: we never even have heard about this disease before July 97.

July 97: Coline is a pretty little girl aged nine months. She just begins to stand up in her playpen, but she still doesn't walk. On the 17th of July, her mother picks her up from her nanny's home. Coline is very grouchy, she looks as if she has pain. The GP comes to our home and only finds that her ears are lightly red, nothing more.

When Coline woke up on the morning of the 18th July, she had a fever (39 °C) and we noticed she was a bit limp. The GP comes again and thinks she is weak because of the fever (he finds a double otitis plus a laryngitis). Coline sleeps all this day long. She sometimes has her eyes opened, but she doesn't cry. At the end of the afternoon, we keep her out of her little bed and we discover at this time that she is completely limp, without any reaction. After a phone call to our GP, we go and take her to the pediatric emergencies at the hospital.

She cannot move her legs, her hands, nor her arms. She only can move her head from right to left when lying on her back on the bed. In the space of a few hours, Coline has become almost totally vegetative!

From then on, the medical team performs the following procedures: a lumbar puncture (meningitis?); an Electroencephalogram (convulsion when she was asleep? We were concerned about poisoning from medications that she might have gotten into at her nanny's home. This hypothesis was abandoned). a brain scanner (normal); a MRI, which finally confirmed the diagnosis of Myelitis made by the neuropediatric of the medical team. It's an acute cervical myelitis in C1 - C4. An echography of the bladder: the bladder is full and Coline is unable to empty it; this, again, confirms the diagnosis.

Coline stayed for three weeks in this vegetative state. She received different treatments: an IV for rehydratation; antibiotics (CLAFORAN, NETROMYCINE); antipyretics (PRODAFFALGAN, ASPEGIC); morphine (SKENAN), because Myelitis is often painful; a daily session of physical therapy (passive mobilization of the four limbs).

There is actually no real treatment for Myelitis. A medical protocol is usually used in this case to try to attenuate the inflammation of the spinal cord. Coline received this treatment during these three first weeks of hospitalisation: a bolus of Corticoids (a great dose of corticoids given in a very short time -- in French we say a dose de charge -- during three days); Immunoglobulines, one IV or perfusion, lasting two hours, over a three day period; Corticoids (little doses) per os (oral -- by mouth) during 10 days.

On the 11th of August 97, Coline is transferred to Paris for a super-consultation with the French specialist of children's neurological diseases. He gives us a great deal of information about a disease we didn't know until then, but he stayed very careful concerning the possibility of recovery for Coline, insisting upon the fact that there is an enormous individual variability in these neurological problems.

I can't describe the state we were in during this awful period. From one day to another, Coline was reduced to a vegetable state. We didn't know how it happened (perhaps a gastroenteritis she made at the end of June; they didn't succeed in finding out the virus responsible for this). And we also didn't know how she would recover. In fact, we didn't know the reason it came to be, and we didn't know where we were headed .…

At the end of the third week of hospitalisation, the recovery began very progressively: support of the head, movements of arms, folding the right arm, getting her right hand to her mouth .... Coline went back home on the 14th of August. After a few weeks at home, the improvements tended to slow and then apparently stopped.

From August 97 until today, we haven't stopped trying to find anyone able to help her, to help us: the best and the worst, serious and honest people, but also charlatans (in desperation, we go and see anybody pretending to be helpful for us. Love makes blind, but sorrow too ...).

Coline today is a very pretty little girl aged 3 ½. Very happy to live, always smiling (which is a great help for us, her parents, her sister and relatives). Damages caused by TM are unfortunately visible and deeply disabling: Coline cannot normally maintain her chest, she stoops and has to lean on armrests or her thighs to support her back. She wears as often as possible, a surgical corset which extends from her hips to the armpits. Essential to prevent her spinal cord from any distortion, this corset limits to a certain extent the movements of her arms (when she plays, when she draws ...) and turns out definitely bothersome in certain situations (when it's warm, during our holidays in Corsica, for example ...).

Coline can use normally her right arm and right hand but her left hand has remained partially handicapped. In the beginning she could only use her two fingers, thumb and forefinger; she could use the pliers with the thumb and the forefinger, but the three other fingers remain more oftenly folded and inactive. She has yet to succeed in opening her hand, very slowly, for sease (for example, she can hold normally the handlebars of her scooter -- open, then close all her fingers on it -- I transformed it so that the accelerator could be activated by hand and she uses this little electric scooter to drive around the neighbourhood). Coline is recently able to open her hand, but not in a quick normal way.

Coline can't use her legs, even if those are sometimes animated by voluntary movements, mainly in the way of pushing. We have in our home a verticalisator, that we call le debout (the stand up), a mobile device in which we install her in order to fortify her legs (to avoid demineralization and weakening of her bones). Seeing our little girl strapped up tight in her corset and attached in her debout is a heartbreak. But we must get her in it. She, herself, feels quite good in it because of her unusual vertical position which provides her a different perception of her own body and her environment.

To these already heavy handicaps go in addition, as if it was not enough, a whole trail of secondary problems (secondary but also hard to cope with). The dysfunction of her bladder which compels us to practise three urinary catheterizations per day (at her awakening, at midday and in the evening). We, of course, have learned to do ourselves this nursing act whose daily repetition for more than two years would seem unbearable for many, but it's now for us a part of our routine. Despite these catheterizations, or maybe because of them, Coline often develops urinary infections which need to be treated. Echographies of the bladder are regularly done, and soon, a scintigraphy of the kidneys will take place.

Each ORL (Oto-Rhino-Laryngologique -- ear, nose and throat problems) infection brings complications because Coline hasn't got a cough effective enough to clear the phlegms. Her daily session of physical therapy is then replaced by breathing physiotherapy, which occurs several times each winter.

Coline is being seen by a rehabilitation doctor. He deals with all the problems related to her handicap, especially all that concerns the corset, different orthesis and devices aimed to avoid distortions of her spinal cord, her hips and inferior limbs. Three times a week she has a visit from her physical therapist, and two times a week we go and see a PT, too, but specialized in children with motor problems.

Coline has been precocious as regards language, she speaks very well and a lot (she is not a girl for nothing)! Perhaps her intellectual development has come and compensates for the motor insufficiency. She now goes to nursery-school three mornings a week. Her teacher, has an assistant who's job it is to exclusively look after Coline at school. (These Youngs in France are called auxiliaires d'intégration -- Integration auxilary. I don't know if this exists elsewhere). A little non-mobile chair was created especially for Coline, for her activities in the classroom.

That was, until today, the story of Coline (which is also, of course, the story of us, her parents and all her relatives). The poor little story of a poor little girl that had badly begun with life. Sorry, we don't believe in G-d. It's certainly a pity, because if we believed, it would be, without any doubt, of some help for us. But you just can't obligate yourself to believe.

We do hope that life will be better for Coline in the future -- we believe in the progress of science; and a great deal of our time and energy will be devoted to her. Before TM, we had no particular aim in life, now we have one, and it is a magnificent challenge!

It has been four years since Danielle was diagnosed with tm. Danielle was 9 months old when she was diagnosed in February 1996.

On February 14th, I picked her up from the baby-sitter's house. She looked a little flushed to me. She did not seem happy when she saw me. When I picked her up, I could tell that she had a fever, but thought it was maybe a cold or something. I only lived a few miles from the sitter's house, so I waited to take her temperature until I got home.

When I did get home and took her temperature, it was about 100. She had a rash on her tummy. Again, I was thinking it was a virus or cold. Her temperature was going up and up for the next few hours. Tylenol was not helping with the fever. It had gotten to 102.5. So, I called her doctor, and was told to give her a little more Tylenol to see if the fever would come down a little. While I was talking to the doctor, Danielle started to have trouble breathing and could not swallow the Tylenol.

We met the doctor at the hospital. When we got to the hospital, Danielle's fever was 105. She was not crying or swallowing anything. She refused a bottle and the breast. At this time we had x-rays done and bloodwork. When the x-rays came back and were read, we were told that she had pneumonia. We were then sent to the local children's hospital. We were there for 21 days.

After being in the hospital for three days, Danielle went limp from her neck down. She cried all the time. We had been seen by so many doctors. We were tired of them coming into the room and pocking and picking on my daughter. No one could tell me what was going on. I questioned whether a spinal tap should be done and was told that there was really no need to be doing a spinal tap. The doctors at the hospital were going to diagnose her with something that (I can't remember the name) was a temporary form of paralysis.

I talked to my doctor about it. The spinal tap was done the next day and they found out that she had spinal meningitis. So, antibiotics were started. Well, to say the least, Danielle got worse. Danielle was still not eating and was swelling up like a balloon with all of the meds that she was on. The doctors did an MRI and CT and found that there was fluid on the spine from c3--c7. At this time they thought that her ears had drained from an ear infection to her spine.

We had an intern assigned to her case. He came into our room about 3 am one morning and said that he knew what Danielle had. He said that it was so rare that he did not know how or where she may have come in contact with it. Then told me it was acute tm. He said that he had never seen or heard of a case before. Now that we were diagnosed, I asked, "now what?"

Physical therapy was started while we were in the hospital. The neurologist started her on an i.v.i.g.g drip that lasted two days and dripped for 12 hours at a time. Steroids and breathing treatments. There are so many meds that she currently takes and that she has taken, that I couldn't possibly begin to start listing them all.

After we were sent home from the hospital, we started seeing the neurologist and pulmonologist on a weekly basis. There was PT three times a week for the first three months. We then went for PT twice a week and currently it is once a week. Danielle has been in and out of the hospital several times with her lungs and not being able to breathe properly. Her lungs are getting stronger.

She is now only paralyzed from the waist down. She does have problems with being able to control going to the restroom, so we have her in pull-ups. She started going to pre-kindergarten this past year and has made a lot of friends. Everyone says she is special. I believe them; she is special. She has proven all of the doctors wrong; they told me that she would not live two months after being diagnosed.

The out come of all of this is that Danielle is a typical five-year-old in a wheelchair. She loves her wheelchair; it gives her freedom! She also has braces and a walker that help her when she wants to go walking. She loves to swim and play with her babies and barbies. She is still in PT and will be attending kindergarten this up coming school year.

I am a college student and a computer science major. I am 19 years old. Since I had my first episode 12 years ago, I've wanted to make people aware of TM. And I would do anything to help someone else with TM. And I mean ANYTHING. I'm one of the lucky ones with TM. I can walk, see, and do really anything. But I have my share of problems.

It all began in February of 1989; I was seven years old. I remember this as though it was yesterday. I had a horrible case of the flu. The worst flu I had ever had. I was sleeping on the sofa because I wanted to be closer to my mom's room. I woke up early in the morning, and I had to go to the bathroom. I tried to get up and walk, but I couldn't. Step after step I kept falling. I tried to climb my way up the stairs to where the bathroom was, and when I got to the top of the stairs, I just sat there and cried. I had lost control of my bladder. I was hysterical. My stepfather came out of the bathroom and didn't know what to do. By this time everyone in the house was awake. I couldn't walk, see, or control my bladder. I was so scared.

I went to the hospital and they looked at me for a little and then didn't know what to do, so they sent me home. I didn't know what was going on. I was still unable to walk for the next couple of days, so my mom and dad decided I needed help. I was taken to a children's hospital. While I was there, I had to get test after test, MRI's, spinal taps, blood, breathing, and many more. It felt like I was just a test patient. I was scared when the doctors could not diagnose my illness. First, they said it was lyme disease and then they said it wasn't. I showed lesions on my spine and brain. After all these tests, the hospital said that I was the first child in the United States to have these symptoms. So, they didn't know what to diagnose me with except they called it a "form of MS." This didn't make my mom happy at all. We wanted to know what was going on.

Then I feel as though a miracle happened. I gradually was able to walk again. And I got my vision back. I was sent home. I had to get physical therapy so that I could walk again. Well, as the years went on, I was pretty much an active kid. But something still happens to me. I have these things that the doctor calls relapses. I go paralyzed for maybe a day to a few days at a time. My step-mom called these episodes "attention attacks." That hurts a lot. But it seems to happen when I'm under stress more then ever. And I usually end up back in the hospital. The hardest part for me is that I feel all alone when this happens. The doctors never know what to do.

When I was in middle school and high school I was very athletic. But I would have my good days and bad days. Some nights I would lay in my bed and cry and hope that tomorrow I would be able to walk and see. I was an all-star field hockey player and captain of my team for three years. I am grateful for this. The doctors once told me I would never walk again and now I disproved them. I never came out and talked about this before because I felt that I was alone. The first time that anyone knew about this was my senior year of high school. I made a speech at a sports banquet and told everyone. They were shocked. I felt a lot stronger after I talked about it. I let many years go by before I went back to the neurologist, because I had to always go alone and I was scared. When I went back last November, the neurologist then diagnosed me with Transverse Myelitis. For me it took them 11 years to tell me what I had.

How I stand now, I am working full time with computers. I'm taking classes. I live with my grandmom. My parents have been divorced since I was five, so that is a frustrating situation till this day. I have problems to this day with my back, legs, eyes, and bladder control. It effected T5 down. Some days my legs feel so weak to do anything. Other days I can run forever. My bladder will never be better. I want to get this looked at but it takes me going back to my doctor and then another. I get sick of it. But I do what I have to. I never know exactly what to do, because I haven't had any guidance. I'm willing to help out anyone who needs someone to talk to. It's so good to know that I'm not alone in the world. Also one last thing, sometimes I get so depressed. I just cry and cry. Well, this is my story... in a short version. Sometimes I just really need someone to talk to. If anyone is willing to talk or email me please feel free to do so. I will do anything to get the word out about TM. Thank you for taking the time to read this.

Natasha got up for school as normal feeling fine. I dropped her off and went to work. At lunchtime (12.00 noon) I went for a sandwich. While I was out, Natasha's school had telephoned and asked me to call back. I arrived back to the office at 12.30 PM. I telephoned the school immediately to find out what was wrong and their answering machine was on; half an hour later I managed to get through.

I was told that she had been running around in the playground with her friends when she suddenly felt a pain in her chest and felt sick. She was told to go and play and not to be silly. Five minutes later she felt very sick and went indoors. She was sick three times downstairs and twice upstairs. At that point the school decided to telephone me. Whilst they were ringing me, Tash was left alone. She started to get a funny feeling in her body and the pain in her chest was still there. She stood up and immediately fell to the floor and banged her head on the corner of a table. When the dinner ladies got back to her, they realised what had happened.

I arrived at school thinking that Tash had a stomach virus and would be fine. When I saw her lying on the bench, I called to her so I could pick her up and give her a hug. She told me she couldn't move. I had no idea. The school had told me none of this. Then I saw a huge lump and bruise on her head.

I thought the loss of use in her legs was a symptom of concussion due to her bang on her head. I decided to take her to our local hospital to check her out. We arrived at 2.15 PM. On the way and when we arrived at Casualty, Tash was complaining of excruciating pain in her back. She was extremely distressed, as was I.

The nurses and doctors in A&E were appalling. They had no idea what was going on and thought that Natasha was having them on. One nurse said, "Oh don't worry, we've had loads of children in this week with the same symptoms, wanting time off from school. They all got sent home with the same answer - go to bed, you will be fine in the morning."

In Tasha's case, they were sadly wrong.

We were left alone in A&E for five hours not knowing what was going to happen. She had not been sick since I had picked her up, but from her chest down, she was getting strange feelings. One minute she could feel everything and the next she felt nothing. It was ever so strange.

They decided they would admit her to the Children's Ward (5.30 PM) and monitor her. When we arrived, a Doctor examined her. He had no idea what was wrong, so he called the Consultant. At this point Natasha's breathing was quite quick. She was getting very breathless. They thought they knew what it was, but they were not sure. They mentioned performing a lumbar puncture.

They decided to contact the specialised Children's Hospital (9.30 PM) about 10 miles away to see if they could admit her. Their main worry was whether her breathing would deteriorate further while she was being transported from one hospital to another.

We managed to get there OK (midnight). She was checked by a House Doctor, who again thought she knew what it was, but was not completely sure. A lumbar puncture was performed and she beeped the Consultant for further diagnosis. We were then taken to the High Dependency Unit for monitoring (2.00 AM).

At 2.30 AM I tried to put my head down for a while. Natasha had gone to sleep. At 2.45 AM I was told that the Consultant had arrived and she needed to speak to me. She had immediately requested a MR Scan and told me she would know further after seeing the scan.

4.00 AM in the scanner. I could see the reaction on the Consultant's face. It was starting to dawn on me that something was seriously wrong.

5.00 AM. I was told what was wrong; it was TM. Natasha had contracted a stomach virus that had convinced her immune system that the virus was in her spinal cord. The immune system destroyed part of the cord.

We did not completely understand the total severity of the situation until the Doctors drummed it into our heads the next day. We were told that if she didn't start to regain anything within the next few days that she would be like this for the rest of her life; not being able to be touched because the slightest movement causes more pain than you could possibly imagine; not being able to move from the chest down; not being able to give your mum a hug.

We are now 18 months down the line. She can sit up with a straight spine for a short period. She can stand, although not for very long. And she can walk with a frame for about ten steps before she gets too tired. She can feel from the chest down although it does not feel right. The base of her feet are still incredibly sensitive and she would rather you didn't touch them, but they are much better than 18 months ago. She has private physio three times a week and NHS physio once a week, and she works incredibly hard. She set a goal last year to walk a step and she did it. This year her goal is to replace the walking frame with crutches. She has such a strong will. I know she will do it.

Natasha is a remarkable child. She is brave and extremely strong willed. She always has a smile on her face and whenever I find that I can't cope and it gets to be too much, she gives me a huge hug and tells me everything will be OK.

I will never forget those first few days. I will never forget the traumatic three months in the hospital. I have been scared for life. It still brings tears to my eyes every time I think about it. Writing this has been extremely hard.

It was difficult not being able to talk to parents who have had children with TM that were attacked so quickly. It only took 20 minutes for Natasha to go from a fully abled child to becoming a child paralysed from the chest down. It hits you like a ton of bricks and your life is turned upside down. It's only time that heals and life does get better; even though the future is uncertain. Natasha will walk again on her own; she has me to make sure of that and her determination.

Transverse Myelitis is a rare disorder that strikes approximately one out of 1.3 million people. I am one of these people. This is my story.

I was born in 1952 in New York. As the second daughter, and one of five children, I strove to be 'different' and unique among the voices of my noisy company. With a flare for the dramatic and musical talent, I enjoyed being the center of attention as often as I could grab it. I was gifted physically, and there wasn't much I couldn't do in this area. My friend Linda and I were the only girls in sixth grade who could climb the rope to the ceiling of the gymnasium. I felt proud and confident, because whatever I wanted my body to do, it could do. Then one morning, without warning, I was paralyzed from my waist down. This is how it happened.

I was in high school and first period was the dreaded swim class. That morning I felt an unusual weariness and even stopped in the hall to lean against the lockers on my way to homeroom. Most of the time, people had a hard time keeping up with my long stride. I remember this detail only because it had bothered me enough that I wrote a note to my best pal, Jeanne, and I still have it in a shoebox somewhere. In the middle of pool time, I asked the teacher if I could sit out and she OK'd it. Then while trying to get dressed, I found I suddenly could not pick up my foot to put it in my shoe. My back hurt a lot and I started to cry. All I wanted was my Mother! They tried to put me in a wheelchair, but
decided a stretcher was needed so the teacher just held and rocked me back and forth while they charged off for it. Then we rolled through the on-going gym classes to the nurse's office where the woman tried to calm me saying, muscles play funny tricks on us sometimes.

I guess they called my Mom, and she came with the family station wagon and they rolled me in there. My sister came too. It was a strange ride, lying down in the back of the car, hair wet from the pool and my Mom and sister oddly silent. I learned I had caused quite a flurry of rumors in my high school class of 400.

When we arrived at Mom's hospital (she was a RN and worked at the hospital), the doctor examined me and struck my knees with his rubber hammer and they just sat there. I was admitted and sent to room 222. Hours later, Mom came to work at 3 PM and I still hadn't seen a doctor. They were waiting for the neurologist and couldn't even give me an aspirin until he arrived. I had a raging headache, because I hadn't eaten since early morning and I hadn't urinated all day. I could just wiggle my big toe on my left foot. That was it. Evening fell and the neurologist arrived and after an examination that included pins, he decided I needed a spinal tap. Mom couldn't watch. She left the room. X-rays revealed nothing. Probable diagnosis? Gullian-Barre Syndrome. Prognosis? Unknown. They didn't have MRI's (magnetic resonance imaging) available at the time and when technology eventually made this possible, my lesion on the spinal column at T-10 was no longer visible. I heard them say the spinal fluid showed an elevated white cell count, but no one ever stopped in to discuss any test results with me. I was only 15. Just a kid.

That night I was moved into the intensive care unit in case the paralysis traveled up and affected my breathing. I was catheterized and had an IV put in for fluids, I think. I heard my Dad had come by to see me, but I was sleeping and he didn't want to wake me. ICU is a strange place to be at night. Weird sounds. Once, when I was obviously distressed, a nurse asked me, "What's the matter, honey? Are you afraid you're never going to walk again?" What? What did she mean? The possibility had never even entered my mind! Mom told me they just put me in there, because I was 'her daughter.'

So began my stay of three months... entered the day before Thanksgiving 1967 and didn't leave til the end of February. I hated hospital food and would often cross out the day's menu and ask for a ham sandwich. If I close my eyes, I can still remember the smell of the place when those trays would come along. I can't eat ham now. The walls of my room were covered with cards from relatives and friends. When I was released from ICU, I got to share a room with an elderly lady who had skin ulcers. I guess I was the only 'youngster' on the floor and so when I could sit up (whoa....stop the spinning world!) in a wheel chair, they would let me roll around to deliver the mail to all the other rooms. Once, my girlfriends came near Christmas and we sang carols around the wing just for the sheer joy of hearing our voices blend together once again. We had spent many an overnight singing Beatles songs till 4 AM and missed that shared experience. Then they left, and it was quiet again. Incredibly, I did not receive any treatment or medications while in the hospital. No physical therapy, no steroids, no vitamins. Too late, the damage was already done. There was no surgery to 'fix it.' I did come down with the flu TWICE during my stay.

Christmas was the hardest time. Mom bought me a purple velvet skirt and it fell off of me. Clothes felt uncomfortable and awkward. My brothers and sisters didn't know what to say or do there. I didn't either. I missed my little brother, who was very close to me. I think he couldn't come in because of his age. Later I learned he had broken down one night and cried for me to come home. Home. When I was finally scheduled to come home there were still no preparations made for 're-entry' into the world out there.

The ride in the car put butterflies in my stomach. It was snowy and I asked Dad to please slow down, I felt dizzy. When I got inside the house, I crawled around to refresh my memory of the place. I could only stand up if someone held on to me, and Dad was my main 'dancin partner.' Frighteningly, I nearly blacked out trying to pee on my own. (It's amazing to me now that no one ever addressed this issue or any other embarrassing, yet critical, concerns I had). We borrowed a bedpan from one of our neighbors. There was no offer of counseling or any support groups. There was no support. We just made do.

I had tutors at home to help me catch up with school. I'm not sure when exactly I returned to school, but I was on crutches by then and yet I used the wheelchair to get around my expansive high school. Somewhere in the middle of all this, I had a physical therapist come to the house to assign me exercises. I hated these. I still don't like to do anything I can't do well. Someone had to help me or I just flopped around. I wasn't convinced they would do any good. I couldn't see any improvement. Discipline was not my strong point. I do remember the day I took more than three steps on my own. One, two, three and I'd usually lose my balance and tumble. This time I caught myself before the tumble and without holding on to anything, I walked clear across the kitchen, where Mom was holding her breath with her back to me. "Ta-dah!" Every time we would visit the neurologist, Mom would say, We want to know when is she going to run? He would smile indulgently and say, be glad she can walk. Running was not in my future.

So, little by little, improvements came. I was walking without aids, but it wasn't pretty. And so far as I knew, I was alone in the universe with this affliction. A little more stamina, a little more balance, a little more courage. Lots of falls. I was exhausted so easily. My body wasn't my own. I couldn't make it do what I wanted. It was out of my control. Like a child again, but no one expects a child to have these abilities. It's OK for a child. I wanted to tell everyone I met, "This is not the real me! This is not how I'm supposed to be!" I felt ashamed somehow. I was no longer graceful. People stared. Children pointed. I wet myself. Worse. I began to hide.

Years passed and I saw the doctor less and less. There was nothing he could do. It was an isolated and lonely season. Still, I tried out for the school musical and got the lead role in Carnival. I was Lily and I had to set my crutches aside. I fell in love. There was a lot he never knew. I was good at pretending. I developed a habit of committing to social events with an initial enthusiasm and then canceling out at the last minute when fears or reality would stop me. My friends took me to a Young Life meeting and I met a real live Jesus I never knew growing up as a Catholic girl. And I loved to hear the stories of Jesus healing the blind, and the broken and the lame. I read the Old and New Testaments with a hunger for answers. I had a lot of questions for God. So, I began my search for meaning in things unseen. Some of my sorrow lifted.

I graduated and went off to college at the University of Buffalo and then to grad school in Library Science. Walking across campus was difficult in Buffalo winters and I usually walked alone as it took me twice as long to get anywhere. I developed all sorts of coping mechanisms, some healthy, some not. I lost my Mom, my surest advocate. Then I began my career in the world of children's library service. Surely, I discovered, I was born to be a storyteller in a long line of storytellers. And, finally, I began, on my own, to search for answers and possible help. This brought me to a neurologist who had other cases similar to mine. He corrected my diagnosis to Transverse Myelitis. He could tell me what had probably happened to me. No one else ever had. He got me into a study that allowed me to have a MRI. The pictures this produced showed only a textbook perfect image of brain and spinal cord. It had been too long. He explained that TM was a de-myelinating disease where quite probably a virus triggers a dramatic response from the body's immunolgical system. The body then actually fights against and mistakenly damages itself in an area of the spinal cord. The light of knowledge was beginning to shine. I had had a severe flu-like illness shortly before my episode and the doctor thought it might have been mononucleosis, although the test had been negative. The myelin sheath surrounding the spinal cord enables the body to receive and send messages along the nerves from the brain and back to the muscles. Once damaged, scaring results leaving a lesion that is sometimes visible with a MRI. All body functions are affected from that point on the spinal cord on down. Nowadays, people are treated immediately with steroids to reduce inflammation.

Sometimes during our visits my neurologist would tell me about another person he admitted with a diagnosis of TM. I was hungry for details but little could be shared. He also helped by sending me to a doctor who eventually taught me to manage my bladder through self-catheterization. That was one liberating step for me. He also encouraged me to try physical therapy once again, and that resulted in the use of an orthotic brace and a cane that has made a world of difference in my gait and endurance. Why this idea had never occurred to us before is a wonder to me. I had just gone from crutches to nothing and I suppose they thought if I wasn't complaining, everything was OK. Well, it was OK, but it wasn't good. And now it was getting better.

My story takes a dramatic turn when I purchase a computer and acquire Internet access. One day, it dawned on me that I could do a search on this critical issue in my life, Transverse Myelitis. I typed it in. I waited. The hair on my head literally stood on end when the screen filled with a message that would change my life. There were others. And they wanted to talk with me! As I read their individual stories, the tears would stream down my face. "Dad, Dad," I would call. "You've got to read this! It sounds just like me!" They understood my fears about the future. They hungered for the facts of just what had happened to them and were willing to work to get the answers. We could all get our voices together and be heard! There were hundreds of us. Some were in wheelchairs, some even on respirators. I began to realize how blessed I really was. They had married, and even had children. They had endured the darkness of the unknown as I had.

The mother of one child diagnosed with TM started The Transverse Myelitis Association. Her name is Deanne, she lives in Seattle and she is my friend. When the opportunity came to meet her and a few people from this group in Columbus Ohio, I knew I had to go. There was no question. Whatever the cost, I knew I had been waiting all my life for this answer to prayer. I flew to Ohio and got myself to the convention center. I was lost. This place was huge and I carried a heavy backpack. At long last I walked into the room where a circle of people were introducing themselves. I sat down next to a lady in a wheelchair and everyone looked at me. "Hello," I said, "my name is Maureen and I've come from New York. I was paralyzed from the waist down at the age of 15 by Transverse Myelitis and I have never met another person on this planet with TM. Sandy Siegel walked across the circle and put his arms around me and I fought not to cry in front of everyone.