Duchenne Muscular Dystrophy

A Parent’s Story

As a parent of 4, I never expected life to be easy.  Noisy yes, fun yes, but not easy.  My eldest was 3 when my youngest was born, and I was overwhelmed with love (and toys and washing, and with smiles and hugs).

When he was 4, my beautiful happy fun loving youngest child, had a simple blood test.  As far as we were concerned, he was pretty much a regular boy, into climbing, running, shouting, and mud.

The blood test picked up a problem.  Not just a small problem.  A massive horrific monster of a problem.  I had never heard its name before.  Duchenne muscular dystrophy.

I was told my little boy’s muscles are wasting away.  That he will need a wheelchair by the time he is 6.  That he will lose the ability to walk by the time he is 12.

That it won’t stop there.  Every single muscle would die, including those in his arms, the ones supporting his spine, the ones needed to swallow, the ones needed to breathe.  The heart is a muscle too.

We were advised life expectancy is teens, early twenties at best.  There is no treatment.  I had to explain this to my children.  Duchenne breaks hearts, it broke all ours.

It was like watching my baby sinking in quick sand.  My world ended on that day and I will never be the same.  I live a life of perpetual grief as we mourn each loss he suffers.  No it doesn’t get easier.  The panic and fear is uncompromising.  The more we ‘get used to it’ the closer to dying he gets, so the harder it becomes.

We had to sell our home and buy a bungalow.  Extend that, do massive adaptations, sink into huge debt.  With therapies and hospital appointments I couldn’t work.  My husband has had to take on work away from home so we can keep our heads above water.  I see him on Saturdays.

My Son is now 18.  He can’t walk.  He can’t stand or transfer.  He can still just about get his hand to his mouth – but by Christmas this year that’s doubtful.  The specialists say he’s doing so well.  How is that for a recalibration of ‘well’?  He’s still alive and breathing unaided.  At 18 that is deemed as doing well.

His spinal muscles are too weak now to support his spine.  He is due to have spinal rods inserted down the length of his spine and every vertebrae scraped, the aim is they fuse solid when they heal.  9 hours under a surgeon’s knife when you have compromised breathing and heart function is not something any 18 year old should have to go through.  I am told the operation has a 5% mortality rate.  But without it he will die younger.  These are the choices I face.

People first say ‘if there is anything I can do to help, just ask’ and they mean it.  But they can’t live up to it.  Last week alone I drove for 12 hours just to attend hospital appointments. Others avoid us – they don’t know what to say, and it’s too painful for them to see us go through this, so they look away.  I don’t blame them.  If I could look away I think I would too.  I don’t have that luxury.

I put on a brave face.  But I struggle with depression, anxiety and panic attacks.  I am surviving….. Just.  But some days it’s like a knife edge.

Some days the only thing that keeps me going is an email from Carers Support.  As I walk this tightrope every day, its only possible to keep putting one foot in front of the other knowing at least there is always the safety net.  I don’t have to use it, sometimes I do, but just knowing it’s there makes my life bearable.