Standing on the edge of the pavement, shivering so much that my wrinkled sailor’s hat was slowly sliding off my head, I forced out the words for the hundredth time that night. “My nephew has Duchenne Muscular Dystrophy.” It hadn’t gotten any easier. I don’t think it ever will.
Despite the fears and anticipations that had been building up all week, I had painted an encouraging smile on my face before heading out with the girls that night. Now I felt entirely vulnerable, knowing that at any second a thoughtless comment from a passer-by could destroy me and leave me in tears in the middle of the crowded street. But I held my head high and waded through the mass of staggering figures, searching the crowds for a friendly face. Our fancy dress fundraiser had led us to the heart of the city, but so far, despite the heavy knot of anxiety in the pit of my stomach, things were going quite well. I rattled my collection tin and headed towards a crowd of boys my age, forcing all thoughts of hesitation out of my mind. “Would you like to donate some spare change to charity?”
Thankfully, with much support from my friends, I got through the night without any incidents and I was delighted when I realised we had raised four times more than our target. I wish the next few years could slip by as easily. At the moment that’s not a possibility. Instead I have to watch as the monster that is Duchenne Muscular Dystrophy slowly eats away at my beautiful five year old nephew and ruins the lives of everyone who cares about him.
But I’m not going down without a fight. I’ll do whatever it takes to raise the money that’s vital to find a cure for this devastating disease. I happily choose the anxiety that builds up inside me as I set out on a fundraiser over the heart-breaking helplessness I know awaits me if I give up and do nothing. I know there’s a cure out there. The cheeky grin on that sweet little boy’s face is what drives me to ensure we find it.