My name is Megan Crawford, and this is the story of John, our son, who was diagnosed with Transverse Myelitis. John was a very active baby. He was growing and starting to form words and almost walking. He was able to stand around a low table and walk all the way around it just by holding on.
On March 12, 2013, when John was just 9 months old, we noticed he was being extra fussy. That evening, we noticed he was suddenly unable to support himself and could not hold his body up. Knowing something was wrong, we took him to our local, small Emergency Room. They ran blood tests, did a CT scan, ran X-rays and even did a spinal tap, yet they could not come to any conclusion. By midnight, his respiratory system was starting to show signs of distress, so he was transported by ambulance downtown to Florida Hospital Orlando. Immediately, he was admitted into the Pediatric Intensive Care Unit (PICU), and doctors began scrambling to try to determine what was going on. His doctor ordered a brain MRI and a spinal MRI. The next morning, we received the news: “Your son has a rare condition called Transverse Myelitis.”
My husband and I were distraught, to say the least, because of everything happening to John and we did not know or understand anything about the condition. Our PICU doctor explained that the myelin in John’s spine has been severely damaged because of the flu virus that he now tested positive for. Though not showing any flu-like symptoms, the virus had attacked the myelin which was causing his neurological system to shut down. By this time, John’s respiratory system was in a severe state, and we were told that life support was his only option. We could also see the paralysis setting in because of the damage to his neurological system. By the next morning, his body was paralyzed from the neck down.
My husband and I moved into his hospital room where we would stay for nearly six weeks. We watched a team of cardiologists, neurologists, nurses, respiratory therapists and physical therapists care for him and watch for any sign of progress. John was able to look at us and smile through all of the tubing, but that was all he could do for weeks. He remained on the breathing machine for 14 days. On day 14, he was taken off, but his respiratory system started to fail, and he had to be placed back on for another six days. Finally, he was able to breathe on his own once again and the tubes were removed.
John’s neurologist stopped by every single day, hoping for any type of movement in his body. About a week later, we saw one small finger move. That tiny movement was what we were waiting for. Though still incredibly weak, it was a start. In the days that followed, we saw other fingers slowly start to move, followed by his toes. Due to the neurological damage, John was still not able to stand or take steps.
Physical and occupational therapy (PT and OT) started in the hospital and continue now to this day. John is still not able to walk due to muscle weakness, but with hope and hard work, we pray he will one day. He receives weekly PT and OT and, thanks to a wonderful nonprofit in Orlando called NextStep, we have an even more renewed hope that he will walk. The aggressive style of exercise being used on him the past year has shown great improvements in his mobility. He can kick his legs, rotate his arms and shoulders more and for the first time ever, he was able to drive a Power Wheels Jeep all by himself! To hear him say “Mommy, I’m doing it!” was simply amazing!
We are thankful for the Transverse Myelitis Association and the support they have given our family since day one. Rare diseases can change the course of a person’s life in an instant. Having the support and guidance of a caring organization behind us makes that path easier.
Megan Crawford
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