The story of Nicky
Isla was my first child, a 8lb healthy baby. However, I noticed her bent big toes and it was noted she had congenital bunions. We were discharged from hospital the next day.
I soon decided to look up on the internet the treatment needed for congenital bunions and soon realised there was no such thing. I later discovered FOP, Isla’s toes were identical to those shown on the IFOPA website.
I made an appointment with the GP, who dismissed my thoughts of FOP indicating I had post natal depression.
We contacted the UK patient organisation FOP Friends and I returned to the GP asking for a private referral to the then FOP expert in the UK. He was unsure it was FOP and sent us for a blood test at out local hospital.
A few weeks later as we waited the blood results, she developed a lump on the back of her head. It was a very scary time, I felt so alone. Then aged 3 months whilst home alone with my newborn, we received the news she had FOP.
FOP is a progressive disease, creating bone that can’t be removed and gets worse through injury. Isla has lost almost all her upper body mobility and most recently developed severe scoliosis.
Isla is now 9 and we no longer feel alone on this journey, our community is small yet mighty and we learn so much from others. We live in hope for a treatment or cure but most all live for each day and fill Isla’s life with love and memories.