A mother has revealed her child’s heartbreaking words after contracting a rare polio-like illness that may leave him paralyzed forever.
Two years ago, Sebastian Bottomley, seven, came down with a common cold. But soon he developed muscle weakness, and eventually was left completely paralyzed.
After running numerous tests, doctors in York, Pennsylvania, diagnosed him with acute flaccid myelitis (AFM), an infection that causes sudden paralysis.
This year, at least 72 children in 22 states have been diagnosed with AFM and another 83 are being investigated.
Despite undergoing more than 2,000 hours of physical and occupational therapy, Sebastian remains stuck in a wheelchair and unable to walk – a situation that has frustrated and exhausted him.
‘Occasionally he says things like: “Mom, why can’t I just walk like everybody else does without all this work?”,’ his mother, Christa, told CBS News.
Two years ago, Sebastian Bottomley, seven (pictured), of York, Pennsylvania, also had symptoms resembling a cold and was diagnosed with AFM
Camdyn Carr, four (pictured), of Roanoke, Virginia, came down with a cold in August. Within two weeks, he was paralyzed and was diagnosed with acute flaccid myelitis (AFM)
Her words come as another mother of a child diagnosed with AFM reveals that his ordeal with the condition has left him crying in his hospital bed.
Soon after Sebastian began sniffling in August 2016, he started displaying muscle weakness. Then, he couldn’t move any body part below his neck.
After a battery of tests, doctors finally diagnosed him with AFM.
AFM is a rare, but serious condition that affects the nervous system. Specifically it attacks the area of the spinal cord called gray matter, which causes the body’s muscles and reflexes to weaken.
Symptoms often develop after a viral infection, such as enterovirus or West Nile virus, but often no clear cause is found.
Patients start off having flu-like symptoms including sneezing and coughing. This slowly turns into muscle weakness, difficulty moving the eyes and then polio-like symptoms including facial drooping and difficulty swallowing.
In rare cases, AFM can cause neurological complications that could lead to death.
Sebastian has had to undergo numerous surgeries and he’s been hospitalized more than 200 times in the last two years.
However, after 2,000 hours of physical and occupational therapy, Sebastian is finally able to dress himself, feed himself, stand up and use the restroom
‘I can walk, I can move my arm and I can like, kneel, and I can scooch on the floor up and down stairs,’ Sebastian told WJZ13.
Sebastian has undergone three surgeries and 2,000 hours of physical and occupational therapy. Pictured: Sebastian relearning how to walk
He is finally able to dress himself, feed himself, stand up and use the restroom. However, he has been left confined to a wheelchair (left and right) since his diagnosis
After 2,000 hours of physical and occupational therapy, Sebastian is finally able to dress himself, feed himself, stand up and use the restroom
‘He’s been hospitalized almost 200 days in the past two and a half years,’ Christa told the newspaper.
However, he still gets around in a wheelchair and relearning to walk has been a difficult journey.
Camdyn Carr, four, of Roanoake, Virginia, has also been left frustrated by his slow progress that often leaves him crying in his hospital bed.
For Camdyn, it started out as a common sinus infection. However, just two weeks later, the entire right side of his body was paralyzed.
Just 24 hours after that, he was completely unable to move or speak.
Doctors at the University of Virginia Health System told Camdyn’s parents, Chris Carr and Brittany Hoff, that he had AFM.
‘There’s no answers for why he got it,’ Hoff told WSET. ‘The doctors said there’s nothing that we could have prevented, there’s nothing that we could have done.’
Camdyn (before AFM, left, and after AFM, right) is unable to breathe on his own and has had a trach inserted. He is undergoing intense therapy but is unable to speak and is only able to wiggle his fingers and toes, and move only one leg
At least 72 children in 22 states have been diagnosed with AFM and another 83 are being investigated. Pictured: Camdyn in the hospital
No specific treatment is available for AFM and interventions are generally recommended on a case-by-case basis.
Children with weakness in their arms or legs may attend physical or occupational therapy.
However, physicians admit they are unaware of the long-term outcomes for those with AFM.
Currently, Camdyn is at the Kennedy Kreiger Institute in Baltimore, Maryland, where he is undergoing intense physical therapy and he is expected to remain there until December 18.
‘[Doctors] said that he will never recover. For the rest of his life – paralyzed,’ said Hoff.
Currently, he is unable to speak and is only able to wiggle his fingers and toes, and move only one leg.
‘He seems okay sometimes, but there are a lot of times where he’s crying,’ Chris Carr told WSET. ‘And I know it’s because he can’t speak.’
A GoFundMe page has been set by Camdyn’s family to help cover expenses once he goes home. So far, more than $3,200 of an initial $3,000 goal.