Arvin’s Perthes Disease requires surgery in Europe

A year ago, our son Arvin, a 10-year-old soccer player was doing what he loved most: playing soccer nonstop. He was training full-time with the Vaughan soccer club and talked constantly about his wish to become a famous soccer player one day.   When the pain in his hip became unbearable, he received an unsettling diagnosis that would dramatically alter his soccer path and most importantly impact his everyday life.

Devastating News

For about a year Arvin experienced an annoying pain in his hip, on and off – we didn’t think it was that big of a deal. In May 2019, he was diagnosed with Perthes disease. This disease, most commonly occurring in young children ages four to 12 years old, is a rare condition of the hip bone, the cause of the disease unfortunately still unknown. What we do know is that for someone with this disease, the blood supply to the hip bone is reduced. There’s a growth plate in the head of the femur bonewhich grows at a young age.  For those affected with Perthes disease, the plate doesn’t get enough blood supply and as a result the bone dies and the head becomes very fragile, painful and very stiff. This condition cannot heal by just resting. Often, conservative or surgical treatment is required to control pain, increase range of motion and to reduce the risk of permanent deforming of the femoral head. Since Arvin’s diagnosis, he has not been able to play soccer walks with crutches and is not allowed to put weight on his right leg. “When I first heard that I had Perthes disease, I was scared because I didn’t know what it was,” Arvin admits. “I knew my parents were scared, so I was very worried.” After 3 months of waiting for an appointment with the surgeon at Sick Kids Hospital in Toronto we found out that there is no surgical treatment available in Canada for the Perthes disease. Arvin will have to use a wheelchair and later crutches to get around and be closely monitored. After spending endless hours researching alternative forms of treatment outside of Canada, We found Dr. Craveiro Lopes in Portugal . Dr. Craveiro is a leader in Perthes disease research and awareness and has suggested a slightly different plan of treatment after reviewing Alvin’s MRI and X-Ray results. He has recommended surgery ASAP “a drilling procedure done as soon as possible which creates new, artificial ways for the blood vessels to carry blood into the bone, so that it stops dying and distraction with an external fixator on if needed”.

Surgery is booked for September 3rd, 2019 in Portugal, Europe and now I am reaching out to friends, family and colleagues to help fund this extremely expensive undertaking.  Any donation, no matter how small will be greatly appreciated.
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Sanaz Noubary 
Maple, ON
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