The Hubbards
Buckatunna MS

My name is Amanda Hubbard.  I have a 4 year old daughter who, at the age of 17 months old, was found to have TM.  She was a happy baby.  She learned to talk at 4 months old and by 9 months old, she was walking everywhere.  On the night of August 7, 2003 she was fine.  For once, she had no infections, no fever and was feeling great.  For the past 15 months we had been fighting all types of infections and unexplained fevers.  She came in around 7:30 in the evening and ate supper, took a bath and around 8:15, she went to bed.

She woke up around 8:45 in the morning on August 8th and she could not put pressure on her left leg.  We thought maybe she pulled a muscle, so I took her to our local doctor.  For some reason, he wasn’t in the office, so I decided to take her to a pediatrician.  Since we were new patients with no appointment, it took us a while to get her seen.  While we waited, she went from being whiney to sleeping.  While she was sleeping, her temperature went up.  The doctor took us back after about an hour and a half wait.  She took one look at her and admitted her to the hospital. 

We were in the hospital from around 11:30 AM until 10:30 that evening.  She went through an MRI, CT scans, a spinal tap, blood work, EEG, an EKG and x-rays.  She still didn’t wake up and her fever went higher.  The doctor had no idea.  She waited for test after test and still nothing.  She came in our room and told me she had called a hospital in Jackson, MS and she felt they could do more for her since it was a children’s hospital.

They put us in an ambulance and rushed her two and a half hours away.  That night they hooked her up to machines and told me they had to wait for the rest of her test results.  The next morning, a neurologist came in and told me that her spinal tap showed that she had Guillian-Barre Syndrome.  She told me about the syndrome and she also told me that they had to put her in ICU and that by the end of the night she would be on a respirator.  These doctors worked around the clock for one month on her. 

When she was well enough, they moved her into a regular room.  It wasn’t until then that she was diagnosed with Transverse Myelitis.

Since that day, we have been in and out of the hospital.  Her bladder doesn’t work well, her bowels hardly work and she has to get around either by a walker or a wheelchair.  When she got sick, she went from being a happy 15 month old to not being able to sit up, crawl, walk, hold a cup, fork, or even a toy!  She had regressed back to a 4 month old child.

August 8, 2006, she will be three years old.  We have been fighting this illness.  We thought she was improving, but it seems she is having one setback after another.  She has to be cathed every 3 hours.  She is on medication for infections.  She is on Ditropan, Neurontin, Baclofen, Protonics, Zantac and Depakote.  She was diagnosed with a neurogenic bladder and epilepsy since her onset.

She has been stumbling when she tries to walk.  She has started running a fever and she cries, because she can no longer wiggle her toes like she could a month ago.  The doctor seems to be very puzzled.  I have to listen to my child cry, because she can’t run and play with her cousins. 

This is our story.  No one else around here that I am aware of has this disease.  It is scary.  My husband and I worry about her daily and we try to take it day by day.  So I ask that you pray for our family as we are praying for all of you.  Thank you.

Amanda and Kyle Hubbard