Twin sisters Lucy Fretwell and Zoe Buxton from Northern Ireland suffer from a rare condition that affects only one in two million people which is slowly turning their bodies to stone. The twin sisters are one of just three twins across the globe to have the rare condition. Fibrodysplasia ossificans progressiva (FOP) is an extremely rare genetic condition that causes muscle tissue, tendons, and ligaments to be replaced by bone, according to the National Institutes of Health.
The condition is usually noticeable in childhood, and starts at the neck and shoulders. Fretwell and Buxton were both born with bony lumps on their toes, which is an early sign of FOP, but doctors didn’t notice it. Zoe and Lucy have suffered the ill-effects of the disease from a young age. They were diagnosed at the age of eight but their parents tried to hide their condition from them.
Zoe Buxton is a fashion designer and able to use crutches or a wheelchair to get around now. Fibrodysplasia ossificans progressiva (FOP) worsens over time and both are likely to lose more mobility over time.
People with FOP sometimes develop extra bone growth around the rib cage, which causes difficulties breathing, and may be unable to fully open their mouths and therefore struggle to eat according to the National Institutes of Health.
Fretwell and Buxton don’t feel demotivated at any given point of time. They are both still young (only 26)and looking forward to the future.. Buxton and her husband are considering having a child. There is a 50% chance that one might pass the FOP to her child.
On the other hand, Lucy Fretwell is considering adoption with fiancé Michael Smyth, 27 as having children ‘isn’t an option at the moment, according to her.
Currently they are participating in a clinical trial for a new drug that could help their condition. So far they have not experienced any further bone growth. So, the future looks promising for them.