Community Rallies To Support Family Struggling With Extremely Rare Medical Condition
Local Child One Of Only Five People Wordwide With Condition, Life Has Been A Series Of Painful Surgeries
The community is rallying to support a local family that has been pushed to the financial brink due to an extremely rare combination of medical conditions.
Nine-year-old Gabriel France is one of only five people in the world suffering from both Kleinfelters Syndrome, which affects one in 50,000 children, and Femoral Facia, which currently has just 700 cases documented worldwide. Gabriel also has Legg-Perthes and has had multiple reconstructive hip surgeries. He will require two additional hip surgeries in the near future, it is likely that the hip with Legg-Perthes will be require a prosthetic hip.
“His life has been a myriad of visits to CHEO for appointments and painful surgeries,” said Gabriel’s father, St. Mark grad Terence France. “Many of the costs we face are not covered. For example, he had to have his baby teeth surgically removed due to his genetic condition. Although the surgery was necessary for is health, it is considered “cosmetic” and cost us $7,000.”
Complicating the situation for the France family is that Gabriel’s sister has autism. Their mother is unable to work due to medical issues but does not qualify for any disability payments. Terence France, Gabriel’s father, is also off work on long term disability, trying to support his family and the overwhelming financial burden caused by their medical problems on just 60 per cent of his regular salary.
“For a family of four, with the extreme needs of my son as well as the needs of my daughter, it has been devastating,” France said. “Our financial resources and credit limits have been exhausted to the point that paying the bills and buying groceries are no longer feasible. We are in a deep hole with no way out.”
France said that although his son has endured more at his age than most could ever imagine, he maintains a positive attitude.
“Despite the health issues and the pain he has suffered through, Gabriel is a happy kid,” he said. “It breaks my heart that his life can’t be ‘normal’. He will never be able to raise his arms above his head or perform several tasks that the average child can.”
France’s goal for himself is to get the help he needs so that he can return to work.
“I am undergoing therapy and the drug program that I need will cost $3400,” he said. “After that, there will be monthly or bimonthly injections for $800. The drug I need is not covered by OHIP or any insurance companies. This drug and therapy is crucial for me to get off longterm disability and be able to return to work.”
There is a GoFundMe page set up to help the family get back on its feet. The page can be found at https://www.gofundme.com/f/px6x8h-please-help-my-family. France said it is “incredibly humbling” to be in a situation where his family is in a situation where they have to ask the community for help. He added that he is extremely thankful for the support shown by the community in the first week of the campaign.
“Our hope is that I can regain my health and get back to work and support my family, and enable my two children to have a better life,” he said.
