The first thing that the midwife delivering Ellis commented on when he was born was his “funny toes”. At his 6 week check up, the doctor called them “infantile bunions” and asked us to massage them daily to get them to fall back into line.
We then found out at six months old that he had a fusion in his neck affecting C2-C3 and C5,C6 & C7 meaning he had no backward head movement.
Ellis continued to baffle the doctors with what could be wrong with him and under went genetic testing, MRI scans, lumbar punctures, ECG, EGG as well as numerous blood and urine tests – but all pulled a blank.
In September 2014, I was sitting at work and happened to come across an article in a tabloid paper talking about the rarest diseases known to medicine. Suddenly, the world stood still when I saw a picture of a set of feet that could have been Ellis’. I cut the article out and research it at home – and turned up to our next hospital appointment armed with everything I could find on FOP. Surely, I hadn’t stumbled by chance across the answer to what was wrong with Ellis? A 1 in 2,000,000 chance? I wanted so badly to be wrong.
A hospital appointment at Oxford John Radcliffe and a gene test later, on the 20/08/2015 my worst fears were confirmed. After six years of searching, Ellis had tested positive for the ACKVR1 gene. He had FOP.
Ellis had been lucky – until in February 2018 when he tripped and broke his left elbow. The elbow, 6 months later, had fused at a 90 degree angle. However, he still gets on with life and refuses to be held back.
I am not going to lie and say its all been smiles and rainbows. I know FOP holds all the cards: it will choose when it strikes; where it strikes; and what it wants to take. The only choice FOP cannot make is how we deal with this. And we choose to be as strong as we can be, and fight this as a family. Some days are harder than others.
Ellis has a personality that lights up a room, he is fearless, brave and determined and we refuse to let FOP take any of that away.