Belfast Telegraph

Why government is failing families living with muscular atrophy

In her own words, MICHAELA HOLLYWOOD from Comber explains why the Government is failing families living with the potentially deadly genetic disorder spinal muscular atrophy

BY VICTORIA O'HARA

Three young children – one at four, and twins at three – were found dead at their London home. While the media speculates, I don't want to.

But what I need to do is draw attention to the fact that these three children had spinal muscular atrophy.

SMA – when you google it – is a horrible disease.

The most severe form can take the ability to smile, and kills more children under two than any other genetic disease.

The intermediate form – the one I live with – took my sister.

I've been over all the statistics before.

I'm blogging from my hospital bedside.

I only got out of bed an hour ago from the nausea that the antibiotic likes to inflict on me.

My lungs are tight, and I'm breathing far too quick.

My numbers are a lot better than they were when I was admitted, and I have a glimmer of hope of release soon to recuperate at home.

Regardless of anything, this family deserved every ounce of support they might have needed.

I've heard too many stories of families fighting for every inch of support while living with a disease that the only option it gives you is to live every day to the absolute brim.

Life with SMA is nothing if not unpredictable and on a windy, bumpy yellow brick road.

The thing is, I would never trade this for somebody else's life.

When you read the media reports, remember SMA is debilitating ... but it gives a life that is so fresh compared to anything else.

I've laughed harder, danced longer, and hugged deeper than some people know is possible. I've still got more people to meet and do that with.

The thing is, the State aren't supporting the neuromuscular disease family like they should.

We're close-knit – even though some of us have never met in person yet. I love every single one of them.

Far too often the only support we have is on Facebook – groups of people (and incredibly cool wheelies!) surround each other with love, laughter and virtual hugs to spare.

We go to each other when things go wrong, or support just isn't to be found.

The State have supported me, yes.

But that doesn't change the fact that until my dad took his first heart attack, the real support we needed wasn't forthcoming.

I don't know when my end will be, but until then I'll smile, fight and when the time comes hopefully I'll be old, and laughing at all those (medical) predictions.

And if not, I'll still be laughing at all the fun I've had.

Extract from Michaela's blog 'Life With Hollywood'

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