By Liana Jacob
MEET THE BRAVE little boy who was PARALYSED FROM THE NECK DOWN after a FLU VIRUS attacked his spinal cord resulting in him being put on a LIFE SUPPORT MACHINE for TWENTY DAYS.
In March 2013, Disney World’s merchandise guest experience worker, Megan Crawford (45), from Florida, USA, and her husband John (51), originally from Glasgow, Scotland, noticed that their son, also called John (7), was being extra fussy and was weak, so they rushed him to the hospital.
Following many hours of blood tests, CT and MRI scans and a spinal tap, their son was diagnosed with a rare neurological condition called transverse myelitis, an inflammation of both sides of the spinal cord. Doctors informed Megan and John that this was caused by the flu virus which had attacked his spinal cord and left him paralysed from the neck down.
The virus was also shutting down his respiratory system which meant that John was placed on life support for 20 days. Five weeks later, despite still being weak they began to see some movements in his hands, arms and toes. He recovered well but the damage to his neurological system was so severe, that he cannot walk and uses a wheelchair to get around.
Megan and John now want to help raise awareness of his condition to prove that even with physical disabilities, their son is still capable of great things.
“The initial symptoms were extreme fussiness which is normal for a nine-month-old but after we noticed the weakness and inability for John to support himself up in normal ways, we knew something was wrong,” Megan said.
“We rushed him to the hospital right away. We were in shock, uncertainty, disbelief and fear; we could see something was severely wrong but not knowing what was going on inside his body was simply the worst.
“To say we were scared would be an understatement. We knew the symptoms were not normal and had no idea what was wrong.
“After many hours of blood tests, CTs, MRIs and even a spinal tap, John was diagnosed with a rare neurological condition called transverse myelitis.
“Though no signs of the flu virus at the initial onset, he did test positive for influenza twenty-four-hours after being admitted to the paediatric intensive care unit. The flu virus had attacked his spinal cord and sent his body in paralysis.
“The virus was also shutting down his respiratory system. John was placed on life support for a total of twenty days and was paralysed from the neck down.
“We had so many questions for his team of doctors and started researching anything and everything we could about transverse myelitis.
“After his diagnosis, we simply prayed for him to be able to breathe on his own and regain movement of any kind. It took many weeks, but after being on life support, he was finally able to breathe on his own and to start small movements on his hands, arms and toes.
“He has recovered well but still cannot walk due to the damage to his neurological system and uses a wheelchair for mobility.
“John has been fortunate and has not had to have any surgeries so far. He has physical therapy and occupational therapy each twice per week.
“In February 2018, we discovered a local non-profit (NextStep Orlando) that specialises in patients with spinal cord and neurological conditions.
“It is an intense exercise-based programme and we have started seeing progress over the past year since he started going weekly. Insurance does not cover this aggressive therapy, so we constantly fundraise to be able to attend once per week.”
Megan says that going through so much in his young life has made John the strongest person she knows and that the sky is the limit for her son.
“The toughest part was seeing our nine-month-old son lying helpless and not being able to do a single thing to help him,” she said.
“When something like this happens, you ask, ‘why him?’ and as a parent, you would give anything to switch places.
“Though our families are far away, we had a small group of friends here in Orlando that came by to sit and pray with us almost every single day.
“We do see a lot of empathy towards John; many people stare at him in his wheelchair and I know they wonder why a small child is using a wheelchair.
“Children come up to John without hesitation and ask John about his wheelchair and why he uses it. We love this. Kids are so honest and upfront, and we love sharing his story and answering any and all questions.
“Our son is the strongest person I’ve ever known; he doesn’t let his physical disability stand in his way one bit. He travels, goes on rides at Disney and just did adaptive surfing for the first time.
“He is in an accelerated reading programme at school and made the principal’s honour roll for the second year in a row. He is simply amazing.
“So far, we have been blessed with positivity. I see looks of sadness sometimes from strangers and I do understand; when looking at a child in a wheelchair with a physical disability, the first thing that most people feel is sympathy.
“But, if you speak to John for just a few moments, you will see how smart, independent and positive he truly is.
“This past weekend at a charity golf event for his therapy facility NextStep, a golfer came up to him and told John how awesome he was and that he was the strongest person he knew.
“Coming from someone that had only been around John for a couple of hours, this meant the world to us.
“He knows and understands that he was very sick when he was a baby and understands the basics of his condition.
“He does not see himself any different than anyone else other than the way he moves around; with front wheels that light-up on his wheelchair, his friends think he’s pretty cool.
“The sky is the limit for John. He is so clever and funny; I know he will accomplish anything he sets his sights on. He has mentioned wanting to design cars, as he absolutely loves cars and trucks.
“While we don’t know if he will ever be able to walk without a walker or other assistance, we plan to give him every available opportunity possible.
“I hope others will look past his wheelchair and give him opportunities to soar and live out his dreams, no matter how small or big.”