Fight to be Upright! Charlie’s Campaign for Lifesaving Surgery
Charlie needs a life saving surgery in Maryland. Many fund raising activities are raising the money needed.
Charlie’s Battle with Ehlers-Danlos Syndrome, Cranio-Cervical Instability, and Chiari Malformation.
Charlie was born with Ehlers-Danlos Syndrome (EDS), a genetic disorder he inherited from his mother, Christine. Individuals with EDS have a defect in their collagen, the main component of connective tissue that essentially acts as glue that holds their bodies together, providing support to the skin, muscles, joints, blood vessels and organs.
Without proper connective tissue, Charlie’s body is literally falling apart. Charlie’s condition is severe and life threatening. His faulty collagen has weakened the muscles and ligaments in his spine so much that his head is no longer stable on his body, compressing his brainstem, causing terrifying symptoms, and putting his life in danger. This condition is called Cranio-Cervical Instability. In addition, his brain is starting to slide out the bottom of his skull. This is called a Chiari Malformation.
Charlie, who was once an active and independent young man, is now confined to a bed, unable to be upright without passing out and convulsing. In a typical day, he will pass out and convulse over 40 times, and he has a constant migraine, and pain from dislocating joints. A year ago he danced all night at his sisters wedding, and now he cannot even stand.
Charlie needs a life saving surgery, however we have not found a doctor in Ontario to help. As Ehlers-Danlos Syndrome is rare, there is NO specialist in Canada that knows enough about EDS to diagnose the condition, let alone do surgery. We have found an EDS expert neurosurgeon in Maryland who diagnosed the condition, and is able to do the surgery on Nov.26th, at a cost of $60,000.
It is a lot of money, but we will do anything to get Charlie upright and back on his feet. He has his whole life ahead of him, and shoul
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dn’t need to live it in bed. This surgery will give him a chance at a normal life.”