F-O-P.  Three little letters which invariably pose a life changing impact within the family unit, for parents, siblings and of course the person with FOP.

Read as Hamish recalls his own story, from when he was aged just 5…

It had been a pretty uneventful day; except I’d fallen over at school.  That evening, my mum was helping me shower when she noticed my glands were swollen. This concerned my mum, so she made an emergency appointment with our GP.  He came up with an unconfirmed, misdiagnosis of tuberculosis and made an urgent referral to a local hospital, within close proximity to where we lived on the South Coast.

What followed were countless skin and blood tests, and at the end I was administered antibiotics.  But instead of helping me heal, my body reacted in an unexpected way: my body began to swell, my right arm locked at the elbow, my spine curved and fused, and my neck fused too.

My parents had so many questions, but instead of answers they were told ‘if his symptoms continue, it is highly probable he won’t survive’. My parents were distraught.  Thankfully, my being here today proves just how wrong that prognosis was.

By good fortune, a visiting consultant from Great Ormond Street took interest in the unusualness of my case and had me transferred to Great Ormond Street Hospital: a definitive diagnosis soon followed.  A full body x-ray was carried out and a comparison made with another child of a similar age, just to confirm.

Our lives changed as a family, literally overnight.  With the words of the doctor etched on my parents’ mind, they made the decision to have another child, and 18 months later they welcomed a healthy baby boy. My parents had felt genuine trepidation that my sister would end up an only child, but luckily their fears were unfounded.  They were now parents to three beautiful children: Nina, Hamish and Amish.

We moved to London when I was 9 because it became impossible to run a shop, raise a young family, and attend the required six-weekly appointments at GOSH.  Growing up, I enjoyed the usual things children my age did: riding my BMX bike after school; doing the Sunday morning paper round on occasions; and playing football. There were times when I fell off my bike, or fell over too, but that didn’t stop me.

However, in time, I began to struggle doing a complete revolution when cycling, and I noticed that my right foot would struggle. I was devasted when a scan at the hospital revealed my right leg had sunken into my hip socket by a couple of inches. I was left with a permanent limp and unable to cycle again. I was put in traction for 11 days in the hope it would pull my leg out. It was somewhat successful but only for a month or two. Sure enough, I started to limp again and a consultation revealed nothing further could be done about it. Such was the brutality of FOP.

Soon after, my family and I travelled to India for our first holiday abroad since my diagnosis. My family were all too aware of the progressive nature of FOP. My parents wanted me to see family and experience the joy of travelling whilst it was physically still possible. I was fortunate to visit family in America several times too. In the late 1990s, my parents surprised me with a fabulous, trip-of-a-lifetime holiday to America. We spent the entire summer flying to various states visiting family; made an incredible visit to see Niagara Falls; and enjoyed a week at Disney World.  We truly made some of the most amazing memories.  These are experiences I still cherish to this day.

My education followed a mainstream pathway.  I didn’t want to attend a specialist school – it was my limbs that were predominantly affected, not my brain.  I had dreams and aspirations the same as any young person.  I went on to study Business Finance and earned my Diploma.  I had hoped to further my studies and go on to university, but FOP had other ideas and stole that opportunity away from me.

I have been blessed with an extremely caring and loving family.  My mum gave up work and has dedicated her life to caring for me. This meant my dad was the sole breadwinner for our family and had to work 12-hour shifts to provide for us.  In the end, my dad took early retirement, just to help my mum care for me.  Many sacrifices have been made by my parents and siblings over the years, none of which have gone unnoticed or unappreciated by me.

Of course, I feel immense guilt in the case of my siblings: having a brother who is ill has impacted their life too. From the outside, when people see a family with a child that’s disabled or unwell, they rarely consider the impact it has on their siblings or family unit.  FOP impacts a person and their family more than just physically, it’s all-consuming.

Creating positive memories as a family is crucial. As one’s symptoms progress, reflecting back on memories is a source of comfort. To a certain extent, it is about living for the moment and living life – whilst you’re able to do things. Weighing up the level of risk of things, and seeing if you’re comfortable with it or not, is a challenge faced by those living with FOP every day.  As I see it, collectively it’s about what works for each family.  Each family needs to figure out the level of risk they find acceptable in terms of giving their child the freedom to experience life.

Being trapped within my body has been the greatest challenge of my life. It’s a tiring battle which drains you emotionally and physically but I’m still grateful.  Sadly, I’m fully aware that there are people worse off than I am. I have been blessed with a wonderful family and my FOP journey hasn’t been alone by any means.

My advice as someone with lived experience of FOP?  We are all unique, with our own individual families and opinions. Find what works for you and your respective family.  Live your best life and be happy.  And don’t put off things if at all possible – because life is as unpredictable as FOP.

I read a quote and it said, ‘No amount of regretting can change the past and no amount of worrying can change the future.’ Wise words.

By the grace of God, I’ll turn 43 in April.  I made it past the average life expectancy.  I’m still here and I’ll keep fighting each day, knowing I have the unconditional love and support of my amazing family, friends and the best team of carers anybody could hope for. My life may be completely different to the one I’d envisaged, but it’s still mine.  FOP won’t define me.

To my FOP family: I’ve been incredibly fortunate to have met some truly inspirational people thanks to FOP Friends and made lifelong friends in the process as well as doctors, other medical professionals and carers whom I wouldn’t have met otherwise. I’m beyond grateful for having you all in my life, along with my family, you’ve made a tangible difference and I wouldn’t be the person I am or lived the life I have without you all. Much love, Hamish