The story of Nicky
My daughter, Isla is now 1 and was correctly diagnosed with Fibrodysplasia Ossificans Progressiva (FOP) at 3 months old after I looked on the internet. Over 90% of cases are misdiagnosed with potentially devastating consequences, yet all cases present malformed big toes at birth. Isla is currently the youngest known case in the World!
FOP progressively forms a second skeleton that imprisons the body in bone. FOP turns otherwise healthy people like Isla into human statues: a healthy mind locked inside a frozen body.
The hardest thing was first of all feeling so alone and helpless. We then learnt that the progression of FOP is often worsened by injury, immunizations, viruses and surgery and right now keeping Isla safe as she learns to walk, explores her environment and socializes is tricky. Everyday we live in hope that a treatment or cure is found.