As we look to launch our new fundraising initiative, “Funds for Fred”, here’s more information on why we’ve chosen to raise funds for this local cause, from a personal perspective.
I’m Sofie, and I’ve worked in the Nursery office since April 2018. I’ve met so many of you, and hope my face is familiar to lots of you.
You may have noticed that in the past few months we’ve had renewed focus on fundraising, and I wanted to personally explain why.
I have two children, Max and Fred. Fred is 8 years old – he’s an amazing son, brother and friend. He wakes up with a smile on his face, and finds the fun in every day. He also suffers from Duchenne Muscular Dystrophy.
We have always thought that Fred was a bit clumsy, often falling or tripping over, and he struggled to keep up with his friends. We were absolutely sure he would grow out of it – after all, kids grow and develop at different rates. Fred was just a little bit slower and a little less sure on his feet. We saw a number of healthcare professionals who told us the same – to just wait, and he would catch up. He had such an amazing, positive attitude to life that we really didn’t worry. At all.
Until one day last March when we were told that, following some blood tests, everything we believed was wrong. He wasn’t getting stronger, and he never would. In fact the opposite was true. He had tested positive for Duchenne Muscular Dystrophy, or DMD, which is a progressive muscle-wasting condition that dramatically decreases life-expectancy – something that he was born with, completely unknown to us.
It’s impossible to describe how we felt, how we still feel. Fred’s love for life is still there, but his future has changed dramatically. We have had to change the way we think about life completely. We are currently adapting our family home to ensure Fred can live comfortably with us without struggling to get upstairs each night to go to bed or play in his bedroom. We plan days out where we can take his wheelchair so he can join in when he can, and rest when he can’t. We no longer say ‘maybe we’ll do that one day’ – we try to make it happen today. Our world has become so much smaller, but our perspective is enormously bigger.
With all this comes daily life – getting to school, doing homework, going to clubs – but each day feels like a mountain to climb. And at the same time, each day is a gift, and one that we don’t want to waste.
We all have our strengths and weaknesses. Fred’s weakness is his condition – but his strength is his attitude to life. His glass is always half full, there is always fun to be had, and always something to smile about. He doesn’t even see his limitations because to him they aren’t limitations – they’re just who he is. And if he can’t do something for himself, he can always find someone who’ll do it for him, for a wink and a smile!
While there is no cure for Duchenne Muscular Dystrophy, there are lots of things that can help Fred live his life to his full potential. An off-road wheelchair, for example, would allow us as a family to get out and about without having to limit ourselves to smooth pavements and accessible (and often more boring!) places, and also help him keep up with his friends, join in with Cubs and be the adventurous, curious little boy that he is. An assistance dog would give him a compassionate companion, as well as the ability to be more independent and do things by himself without constantly having to ask for help. Disabled horse-riding lessons would allow him to do the physiotherapy he needs on a daily basis in a fun, outdoorsy way that would keep him interested and stop him rejecting it as a boring waste of time. The list goes on…
There is no end to Fred’s challenges, but also no end of inventive ways to approach them. The Nursery wants to help be a part of this, and wants to raise money to be able to give something to Fred to help him enjoy life. We are launching “Funds for Fred”, where you’ll be able to see where your money is going and know that every penny donated is going towards helping my little boy to keep smiling. There is no obligation to take part in any of the fundraising events or activities, but please know that, if you do, I will be thanking you from the bottom of my heart.