This week’s blog is written by Shelley Simmonds, mummy to 4-year-old Fraser who has Duchenne Muscular Dystrophy. Shelley shares her story of climbing Mount Snowdon, carrying her son on her back the whole way, and raising money for the UK charity Harrison’s Fund.
Have you ever climbed a mountain carrying a small boy on your back? Neither had I, until 3rd June 2017 when that’s exactly what I did. Why? Because I am a Mummy and I am desperate. My 4-year-old son has Duchenne Muscular Dystrophy, a fatal genetic condition that will waste away every single muscle in his body until he can no longer survive. My son will die. And I am not prepared to let that happen without a fight, so I pushed myself out of my comfort zone to try and make a difference and change the future.
There are many things in life Fraser can’t do because he has weak muscles which don’t allow him the freedom to walk. He uses a wheelchair full-time, but on that June weekend, I became his legs and carried him all the way to the top of Mount Snowdon in a special carrier on my back. He achieved and experienced something physical that would otherwise not be possible for him — he became a Mountaineer!
A simple picture that Fraser had drawn at nursery of a mountain gave me inspiration for this challenge, and once I had told myself I was going to do this I set to work on the training. Not being particularly fit (or thin!) getting myself moving was a challenge in itself – week by week I walked more and more miles whilst carrying heavier weight packs on my back – Fraser is 2.5 stone and I needed to be prepared! The story started to get out to the local community and soon I was appearing on radio stations and in newspapers – people on the train to work were stopping me to ask me if I was ‘that Snowdon lady’!
I have been working in partnership with a small UK charity called Harrison’s Fund since Fraser’s diagnosis, a charity dedicated to funding research into treatments for children with Duchenne.
I wanted to do this to make a life memory with my son, whilst also raising money to help others, which is always at the forefront of my mind. United in fighting for our children, I believe we can make a difference – seeing the donations rolling in was an amazing boost and our mere little walk up a mountain has raised an incredible £12,000!
The day was an unbelievable experience – the motto is to never work with children or animals and I must admit that I was nervous about how my son would cope being stuck on my back for hours on end! But he was fantastic, he enjoyed every minute of talking to the sheep on the way up and telling Mummy to go faster! I will cherish this day for the rest of my life.
Duchenne can happen to anyone, 1 in every 3,600 male births to be precise. It can happen with no family history, meaning this was just as likely to happen to your son as it was to mine. I have had some amazingly kind words from people telling me that what I have done is inspiring, but my son is the inspiring one in all of this. He has taught me more about life in his 4 short years than I learned in my 33 before having him. If you were a Mummy, you would do the same. It’s just what we do.
You can find Shelley and Fraser on Facebook here.
If you’d like to show your support for Shelley you can find her fundraising page here.