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Wee John’s Transverse Myelitis journey

Initial diagnosis

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, he was suddenly unable to support himself and could not hold his body up. Knowing something was wrong, we took him to our local Emergency Room. They ran blood tests, a CT scan, 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 because of everything happening to John. We did not know or understand anything about the condition. Our PICU doctor explained that the myelin in John’s spine had 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 signs 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. For the first 4-5 years after the initial diagnosis, John was extremely susceptible to even simple colds. A slight cough would cause him to end up in the hospital for several days due to a weak cough and poor respiratory function. Thankfully, as he’s getting older, his system is getting stronger.

Life changes

Physical and occupational therapy (PT and OT) started in the hospital and continues 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 each year has shown great improvements in his mobility. He can kick his legs, and rotate his arms and shoulders.

Life these days

John is now 11 years old. Although he cannot walk and probably will never be able to, he doesn’t let anything stop him. He is an honor roll student and has his own YouTube channel where he loves to provide Roblox tutorials, share supercar reviews, and even taste tests. We travel as a family as often as we can. A physical disability may be a life-changing event however we do our very best to ensure John has the very best quality of life. He is so loved by his family and friends!

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Wee John’s Transverse Myelitis journey

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.