Cole: TM Onset 6 months old
Barrie Ontario Canada

Cole was just like any other six-month-old boy, just learning to roll over, move around and beginning to sit up on his own.  That all changed on Thursday, March 15th 2001.  Cole was sitting on the floor playing when his back seemed to give out and he collapsed.  When my wife, Wendy, picked him up, he began to scream in agony and became very weak and limp.  We took him to the nearest clinic where the doctor barely looked at him and told us he was fine and to take him home.

Cole became even weaker over the next few hours and my wife took him to the Royal Victoria Hospital in Barrie, Ontario, while I stayed home with our other two children, Brian (10) and Bailey (3).

At the hospital, Cole could barely move and his breathing was very laboured.  His legs began to turn red and purple (modeled) and swollen.  Wendy noticed that his bladder was enlarged and very hard.  He was retaining urine and had to be catheterized.

I joined my wife and Cole the next morning and found it hard to get anyone to listen to what had happened. They made us feel guilty, like we had done something to him.  The more we insisted they concentrate on checking out his back, the more suspicious they became.

Finally, after a shift change, a new nurse and doctor listened to our story and began some action.  Cole had a cat scan, ultra sound and a spinal tap.  It was Saturday morning by the time any results came back and by then Cole was in very bad shape.  The first diagnosis was Spinal Meningitis and he was immediately air lifted to Toronto's Hospital For Sick Children.

By the time we drove to Toronto, Cole was totally non -responsive and in critical care.  This is where he remained for two weeks.  An MRI was ordered.  Cole's breathing was so poor that he was intubated and put on a respirator.

Finally, on Sunday, Cole was diagnosed with Acute Transverse Myelitis.  Cole's spine was inflamed from C2 down.  It is not known what caused the inflammation.  It may have been a virus, an auto immune attack, or even a reaction to vaccines.  He had been having on-going respiratory infections since his four month vaccine.

Cole was given massive doses of steroids and immunoglobulines.  Some of his functions started to return in a couple of days.  By Tuesday, he seemed to finally recognize us and started to move his arms slightly.  The next day his hearing returned and he had a little more movement in his arms, but his breathing was still very poor and he remained on oxygen.  He also remained paralyzed from the chest down.

We had never heard of Transverse Myelitis and could not understand why this syndrome had struck our son.  I guess that's something that we will never know.

My wife and I joined the Transverse Myelitis Association.  We discovered many things about TM.  We talked with other parents of children with TM and people of all ages from all over the world.  We are so lucky to have other people to turn to for their help and support.

It has been nine months now since TM hit Cole.  He is still paralyzed and shows little improvement in his trunk and legs.  He cannot walk, stand, or even crawl.  He has, however, learned to sit up by pulling on his pant legs, and pulls himself around the house with his arms.  We have not given up hope, but with each month it seems less likely that Cole will ever recover.

Cole has therapy four times a week, two physio and two occupational.  He makes many trips to Sick Kids Hospital in Toronto and to Bloorview Macmillan Center.  He sees neurologists, urologists, pediatricians, nurses and therapists there.  At home, Cole has occupational and physio therapy and we are working with his physiotherapist doing neuromuscular electrical stimulation.  She will also be helping us when we start water therapy in the new year.

Cole needs a lot of special equipment.  He has a stroller called a kid cart that has several straps that hold him in.  He has a prone stander that he is strapped into to help strengthen his legs, therapy balls, a specially made table, and a neuromuscular machine.  We also have other things on loan, such as a caster cart, a para-podium brace he can stand in, and a suction machine for when Cole is sick and he cannot cough properly to clear his airway.  These things can be borrowed for a short time, but eventually they will have to be purchased.  We are also looking into different types of wheelchairs.  We are waiting to try the “Rabbit.” It is like a stander with wheelechair wheels so he can get around the house.  Cole wants to be mobile.

Cole was catheterized twice a day for a while.  We no longer have to do that, but he is on a special diet and on suppositories every second day for bowel movements.

We are planning to attend a TMA Children’s and Family Workshop in Columbus, Ohio in July 2002.  We hope to gain some knowledge there, and to meet other parents who have already gone through what we are going through.

All in all, it has been quite an emotional and financial drain on our family.  We have a long road ahead of us, but we will try to overcome any problems that may lie ahead.  Cole is a very smart and happy little boy, and we are lucky to have him in our lives.  We thank G-d he has come this far.