Harvey’s Rare Bone Disease

Our precious little boy, Harvey has been through a lot. Doctors knew something wasn’t right from the moment he was born but it took two years to diagnose his disease, Hypophosphatasia (HPP), as most of his specialists had never heard of it.

HPP is a life-limiting condition associated with significant mortality (as high as 50% for paediatric onset HPP) and for those who do survive; weak and brittle bones which repeatedly break and fracture; muscle weakness and intolerable join pain; other serious complications to the brain, lungs and kidneys.

Needless to say, we are doing all we can to find a treatment for Harvey. But at this point the only cure, a drug called Strensiq, is far too expensive for us to access (approx. ten million dollars) and it is not subsidised by the government. To know there is a cure for Harvey and to not be able to access it is heart breaking. This is the reality for many with rare diseases. But we continue to hope. And we are lucky because for now, Harvey is relatively healthy and happy. He is a very special little guy with a quirky sense of humour (he loves watching his older brother put his underpants on his head) and he’s just recently learnt all his colours.