Christina Strong founded the Joshua Hellmann Foundation for Orphan Disease in Hong Kong in 2008, in honor of her son, Joshua, who lived an active and inspirational life for 15 years before he passed away after a courageous 5 year battle with Melas Syndrome – an “orphan disease” defined medically as a rare disease, a genetic mutation condition that is being actively researched by clinical specialists.
Christina understands the suffering families go through when a child is suddenly impaired and aware of the struggles people living with a rare disease and their families face. She is familiar with the overarching loneliness felt in battling a rare disease and the frustration of the long and difficult diagnosis, as doctors lack knowledge on and exposure to such diseases. Rare disease patients often don’t have access to effective, up-to-date treatments. The only treatment offered to Joshua was a multi-vitamin cocktail and an amino-acid supplement used by athletes to enhance their performance.
Christina has lived through the challenges of seeing her child deteriorate before her eyes, feeling stuck and helpless because of the lack of medical knowledge and assistance. After Joshua’s death, Christina has courageously chosen to help others and offer hope for the next generation of children with rare disease. Certainly, for Christina, there is irony in the word “rare” itself: ‘Rare’ is a word most often used to convey the same values as ‘precious’… unique… valuable. And if one adds up all of us precious beings that suffer from a ‘rare’ disease, the number is staggering – 60,000,000 and counting. The way each of us deals with what ails us is always unique and therefore, it is quite easy for any of us to relate to ‘rarity’… that rarity that comes in those moments when we must truly face life and adversity by ourselves.