Madeleine is a nine-year-old little girl from Victoria who is suffering from a rare form of arthrogryposis. Her two surgeries to manage her scoliosis and kyphosis were unsuccessful and as a result, her neck has collapsed.
Everyday, choking is a serious and life threatening concern. She cannot look up and her chin is fixed to her chest.
Her very complex condition requires a surgeon that has experience and expertise operating on children with this disease. Only corrective surgery and effective post-surgical therapy can remedy Madeleine’s neck and yet no surgeon in Canada has ever seen a case like Madeleine’s.
Her parents have found a doctor in Florida who is a deformity surgeon with experience treating kids like her. At the Paley institute, under Dr. Feldman’s excellent care, Madeleine has been told she has a chance for a normal life.
With uncertainty over whether MSP will cover any of the treatment, the cost is well beyond the Murray family’s means. They have re-mortgaged their home and sold their life insurance policy, but have only managed to pay for the first of Madeleine’s two required corrective surgeries and post-surgery rehabilitation.
Friends have started a GoFundMe campaign with a goal of $500,000 to cover surgery, travel expenses and rehabilitation costs. So far some $150,000 have been donated.
UPDATE: Maddie’s father has posted a video of her first attempt at walking after the halo attachment operation: