Monday, 5 August 2013

[4] You Got A Fire...

-- ...and it's burning in the rain. --
Life is often like a fire.  It burns, sometimes eating forests of life.  Other times, it struggles in the rain.  For all of us with muscle disease, we must find ways to burn strong through tropical rainstorms.  More than anything, we must fight for each other.
Spinal Muscular Atrophy is just one of many types of neuromuscular disease.  These muscle-wasting conditions affect 70,000 people right across the United Kingdom.  An estimated 2,000 of those live in Northern Ireland.  I can count the number of people living with SMA I have met, face to face, on two hands.  I have met dozens of people living with neuromuscular disease.  It is that which makes the Muscular Dystrophy Campaign community so special.
I have seen families with numerous types of muscle disease infiltrating nieces, nephews, brothers, sisters, sons and daughters.  I have also seen families with just one strong flame who they fight with and for.  Our conditions have different names, but one thing roots us to the ground - our muscles.  One way or another, we struggle to get our muscles to do what we want them to.  Gravity becomes our enemy, but many of us find a way for the dark side to help us unwittingly, and we balance our wobbly heads on weighed down shoulders with the help of gravity.
This past weekend I had the honour to help a condition other than SMA.  Duchenne Muscular Dystrophy is a condition which robs mainly young boys and men of the ability to run, jump, and in some cases the ability to breathe.  I have lost many family friends to this cruel disease, which I refer to on the days when my knees hurt more, or I can't catch a breath for coughing.  To have the ability to run and jump and to end up in a chair some day is so much worse than just never being able to do it in the first place for so many reasons.  My family struggle to see that from my point of view, but to me there's always something worse I could face.  I'm eternally thankful for the fact that I never learnt to stand, as that makes sitting so much easier.
One of the friends we lost is Christopher McCollum, a young man who lived for sport.  Whether it was Manchester United or Belfast Giants, he'd know all the ins and outs.  Cheering him on was his mum and dad.  When Christopher passed away, they devoted themselves to improving the lives of others like him for generations to come.  The McCollum Report on Muscular Dystrophy was named in memory of Christopher as much as it was in honour of the efforts of his parents, who were named Campaigners of the Year by the Muscular Dystrophy Campaign.
Christopher McCollum
Christopher McCollum
The Christopher McCollum Fund is a charity set up by his parents to raise money to fund equipment for other young disabled people in Northern Ireland.  They are currently Sainsbury's Bangor Charity of the Year.  I had the honour of joining them on Saturday to help with their fundraising efforts, half of which is going to the Duchenne Research Breakthrough Fund.  As much as I live with SMA, there are thousands in the UK alone living with Duchenne.  Their fight is as important as ours.
When I received a phone call to ask if I would like to have the honour of carrying the Olympic Flame on its journey around Northern Ireland, I immediately said yes.  As much as it would be a great victory for me personally against muscle disease, it would make a statement.  We are here, we are citizens, and we stand alongside you all as people achieving dreams, living life, and loving life.  More than that, I knew people would stop and not think about my disability, but me.  I had one wish through it all - that Torch and the Flame it held were sacred to Olympus, but to everyone in Northern Ireland who had lived through muscle disease, whether they had it or someone they love.  So I made the decision to not sell my Torch, but to share it with the community in what I like to call Torch Tours.  Rather than show up with the standard bucket, I wanted to bring my Torch out of the living room and share it round for a little while.
Sainsbury's Bangor Poster
Sainsbury's Flyer
Fundraising has been in my blood ever since dad put his cap on the floor when he was waiting with Martina and me on mum coming out of an inaccessible shop and a man threw £20 in.  When I get to do more unique challenges, I thrive on the fun I get to have.  Provided I have an unlimited supply of tea, you know it's going to be an illegal amount of FUNraising.  This was my first outing with The Christopher McCollum Fund, and the first time I had the chance to specifically support a particular condition - in this case, Duchenne.
I met hundreds of people, so many of whom had an unparalleled interest in muscular dystrophy and the things we were doing to chance perceptions.  Sainsbury's staff were incredible, and the McCollum's were as enthusiastic as ever.  I met many of those in their team, and was amazed by the enthusiasm of so many people who were rallying around a local charity with a big heart.
Sainsbury's Collection!!
With Gerry and Sainsbury's Staff ready to collect!
Sainsbury's Staff Team
The Sainsbury's Team
Of course, as part of my fully fledged initiation as a Directioner, we found time to hunt out and oogle the GQ covers when we had a lull in people.  I also found time to dance, and laugh at my niece trying to make me laugh while I was talking.  All in her days work.
OM-GQ! It's HARRY!!!
OM-GQ! It's HARRY!!!
I also met a wonderful young girl who restored any faith I may have lost in humanity.  Her first words to me were "are you really smart?" - something which imediately put a grin on my face.  And when we talked about how I could be really silly, and how important it was for me to work hard at my exams, she was content having had her perfectly innocent questions answered.  As I was preparing to leave, she came back to me with a necklace which she had bought for me - something which floored us all with shock. I have been wearing it with pride in the human race since - and to her I say thank you, never change!
I came home and went out to party that night - burning the candles at both ends and in the middle.  None of us are guaranteed tomorrow, but we have right now.  So rather than hold off, no matter how much pain your foot feels, it's important to love life.  Yes, I may well have drank tea in a bar - but that's me.  I am me, not the girl three doors down.  I have SMA, not Duchenne - but they need support as much as I do.
Those of us with muscle disease are fighting flames in a tropical storm - something Northern Ireland has seen plenty of these past few weeks.  We burn brightly.  Even though today has been drowsy, my flame stays lit with the arrival of my Muscular Dystrophy Campaign wristbands.  It gives me cause to fight through the Spatone and Pineapple cocktails and endless cups of tea that have made today what it was.  Tomorrow is another day, and who knows - maybe one of those £1 coins we got on Saturday could cure Duchenne tomorrow.

Heartbeat by The Fray speaks of a number of things to me, depending what state of mind I'm in.  Today, it speaks of the Flame inside everyone - and how you should use it to educate and make the world and your universe a better place.
Please visit for more information on The Christopher McCollum Fund and their partnership with Sainsbury's Bangor.
Me with Gerry and Geraldine McCollum July 2012
Me with Gerry and Geraldine McCollum July 2012

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