On Being a Rare Dad - Jeans for Genes

On Being a Rare Dad

This Father’s Day, Chris Bedford-Gay of FOP Friends writes a heartfelt ode to being a “Rare Dad” – a father to a child living with a rare genetic condition.

In 2008 I became a father.  But only after little Oliver stubbornly refused to arrive on time.  He was plucked out via emergency caesarean section after a long labour.  He was born for all intents and purposes perfectly normal. Well, apart from his little “turned in” big toes.

His mum and I were now parents, proud parents.  We were the first out of all of our respective siblings to provide a grandchild for the grandparents to dote upon.  Oliver was special and everyone was completely in love with this tiny new baby.

My “Rare Dad Day”

Oliver however was not just the first grandchild, he was not just our first child, he was also 1 in 2,000,000 to be born with Fibrodysplasia Ossificans Progressiva (FOP).  The first few months proved tricky, as they are for all new parents.  Oliver had various different health concerns but they were all pretty minor in hindsight.  We knew he had ‘funny toes’ but none of the many medical health professionals we met with ever gave us cause for concern.  Even the foot specialist never had a clue, she tried to straighten them!  We had no idea of their significance, until the day we met with a neurosurgeon.  Those “turned in” big toes were the clue, the key, to the devastating diagnosis a year after his birth.  That day I became a “rare dad”.  That day was in 2009.

So what is FOP? (Stone-man or human-mannequin disease as the media like to call it)

As well as being one of the rarest diseases, FOP is also one of the most debilitating.  FOP causes muscle to turn to bone, imprisoning a child in a second skeleton.  Progression is variable and any injury could trigger an explosive episode.  Life expectancy is limited to 40 but complete immobility is to be expected by age 30, with restrictions starting early in childhood, taking a child’s independence away just as most children gain it.

Oliver though, for whatever reason, is relatively untouched and not a day goes by when I am not thankful for this.  He is now 10 and has most of the mobility he was born with.  He is bucking the trend.  He has some restrictions but he can still reach the sky, can walk up-right, can jump, can run, can swim, and can more or less do what his peers can with only some limitations due to the risk of injury.  The feeling of relief, joy and pride, when we watch Oliver participate in a sport such as archery, he should no longer be able to do, is incalculable.  Even small, insignificant behaviours such as running through a field, arms flailing, brings a smile to our faces.  We don’t know how many more of those days we have left.  FOP could take Oliver’s movement tomorrow.

We are lucky! 

How can you have a child with a devastating, life-limiting condition such as FOP yet consider yourself to be lucky?  Oliver’s chances of FOP were 1 in 2,000,000 – you don’t get much unluckier than that in the medical world.  But odd as it may seem, we are lucky in the rare disease world.  We feel lucky.  We have a diagnosis while many parents of both FOP and other equally rare conditions, are still living with the unknown; figuring out he had FOP did not cause fallout but for many FOP children it does; Oliver’s diagnosis took just over a year when the average is 7 or more years; we also have many research teams across the globe, all racing to find a treatment and a cure for FOP.  We also have our community, our FOP friends.  Without them, we would be lost.

What would you do?

No-one can say how they would feel if something happened to their child, we certainly had no idea.  After the initial shock began to wear off, I began to think: What could I do? I couldn’t just sit there and accept this was to be my little boy’s lot in life.  I needed to at least try and change his future.  But how? From that point on, my life and my family’s life became committed to helping the research teams find that treatment.  Our family was now part of a bigger team.  I became a Rare Dad.

Now nine years on and we have achieved more than we could have imagined.  We can hold our heads high and say we are fighting this.  This was never part of our grand plan as we walked down the aisle together, dreaming of our future with our children.  But as parents, we aren’t really anything special: which parent wouldn’t do anything for their child?  We never thought we would have our own charity, but we do.  We are proud of what we have achieved and will continue to do everything in our power to support those searching for a treatment for our baby.

The new normal

But what about being a rare-dad?  Well today I have three sons, Oliver, Leo and Harry.  Neither of Oliver’s brothers carry the FOP gene.  We pretty much aim for as “normal” a family life as we can manage.

That is of course the rare-normal – more hospitals and doctors’ appointments than average; more explanations to strangers; regularly knowing more than most doctors – but mixed into this is our family and we spend even more time creating good memories to look back on when times are darker.

Of course with three boys there is a lot of arguing, shouting and competition, but in between there is also a lot of fun. We try not to say no to Oliver when he wants to join in, we just have to find a way to say yes.  This is terrifying when any injury could trigger an FOP flare-up and cause progression of his disease.  But we take a deep breath and let him go.  Oliver rides a two-wheeled bike, a scooter, he visits adventure playgrounds, climbs trees, goes to parties, has nerf battles in the garden, enjoys water slides and rapids, flies on zipwires, and even does rough-and-tumble with his brothers.  It scares us but we let him do it. He has to have his memories too.

Time for yourself

Everyone needs some time-out, a time where they are themselves without the pressures of the rest of life.  Is this truer for rare-parents? I don’t know. I think probably being a parent is just a tough job, period.  Being able to turn-off regularly, to have an escape with friends, refreshes you.  I didn’t realise this until being encouraged to join the Round Table, a social group and charitable organisation that meets twice monthly to do something fun like getting beer, meals together, going abseiling, gorge-walking, archery, go-karting, arcades, and engaging in sports.

Regardless of the activity, you get to step away briefly from being a dad, or a rare-dad.  Round Table also has a catch phrase, “Ordinary people doing extraordinary things”, I really can’t think of a better description for all the rare-dads (and mums) out there.

So to all the rare-dads, enjoy this Father’s Day and remember to take time to enjoy your rare-family but also to take some time out for yourself.

Jeans for Genes Day is supporting FOP Friends this year amongst many other charities. Sign up for a free Jeans for Genes Day fundraising pack and help us support small charities like FOP Friends who promote education and raise awareness about the condition.