A little boy was left paralyzed and on life support for 20 days after a flu virus attacked his spinal cord.
In March 2013, Megan and John Crawford, from Orlando, Florida, noticed that their nine-month-old son, also called John, was weak and being fussier than usual, so they rushed him to the hospital.
Doctors diagnosed John with a rare neurological condition called transverse myelitis, and told his parents that he would be paralyzed from the neck down.
John eventually regained movement in his hands, arms and toes, but the damage to his neurological system was so severe that he cannot walk and uses a wheelchair to get around.
The Crawfords want to help raise awareness of John’s condition to prove that even with physical disabilities, their son, now seven, can have a fulfilling life.
John Crawford, seven, from Orlando, Florida, was rushed to the hospital in March 2013 after being fussy and weak. Doctors diagnosed John with a rare neurological condition called transverse myelitis. Pictured: John at nine months old in the hospital, left, and in the hospital at date unknown, right
Transverse myelitis is an inflammation of a section of the spinal cord that often results in paralysis. Pictured: John in his wheelchair at the park
‘To say we were scared would be an understatement,’ John’s mother, Megan, said. ‘We knew the symptoms were not normal and had no idea what was wrong.’
Doctors performed blood tests, CT scans, MRIs and a spinal tap. After several hours, John was diagnosed with a rare neurological condition called transverse myelitis.
Transverse myelitis is an inflammation of a section of the spinal cord.
It damages the myelin sheath, an insulating barrier of fatty protein that protects the nerve, and interrupts messages sent by spinal cord nerves.
This results in pain, weakness, paralysis, abnormal sensations and problems of the bladder and bowel.
Transverse myelitis can be caused by several conditions including infections like influenza and immune system disorders.
‘Though no signs of the flu virus at the initial onset, he did test positive for influenza 24 hours after being admitted to the pediatric intensive care unit,’ Megan said.
‘The flu virus had attacked his spinal cord and sent his body in paralysis.’
Doctors told John’s parents that the flu virus had attacked his spinal cord and paralyzed him from the neck down. Pictured: John in his wheelchair at Star Wars Launch Bay at Walt Disney World
The virus shut down John’s respiratory system and he needed to be placed on life support for 20 days. Slowly, he regained movement in his hands, arms and toes. Pictured: John walking with prosthetic legs, left, and in one of his physiotherapy sessions, right
Around 1,400 cases are diagnosed in the US each year, according to the National Organization for Rare Disorders.
The virus shut down John’s respiratory system and he needed to be placed on life support for 20 days.
‘The toughest part was seeing our nine-month-old son lying helpless and not being able to do a single thing to help him,’ Megan said.
‘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 [move] his hands, arms and toes.’
John recovered from the virus, but still cannot walk due to the damage to his neurological system. He currently uses a wheelchair for mobility.
The little boy has not needed any surgeries thus far, but is in physical therapy and occupational therapy twice per week.
John’s parents say he knows that he was sick as a baby and understands the basics of his condition.
John currently attends physical therapy and occupational therapy each twice a week. Pictured: John and his parents meeting actor Elijah Wood
John’s parents say they love sharing John’s story and raising awareness of his condition whenever someone comes up to them and asks questions
‘He does not see himself any different than anyone else other than the way he moves around,’ Megan said.
‘With front wheels that light up on his wheelchair, his friends think he’s pretty cool.
‘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.’
While Megan and John don’t know if their son will ever walk without assistance, they make sure he travels, goes on rides at Walt Disney World and tries new things such as adaptive surfing.
‘Our son is the strongest person I’ve ever known; he doesn’t let his physical disability stand in his way one bit,’ Megan said.
‘I see looks of sadness sometimes from strangers and I do understand…but, if you speak to John for just a few moments, you will see how smart, independent and positive he truly is.’