‘George’s Journey’ Family Fund have just hit an incredible £250,000 in their fundraising endeavours. George’s mum, Lilian, looks back on their fundraising efforts, the support they’ve received from their community, and how the welfare pot has helped her son, who lives with Duchenne muscular dystrophy.
Fundraising as a Family Fund has allowed us to buy a profiling bed for our son
We started our Family Fund for my son, George, in 2015 to raise vital funds – and hope – for research into Duchenne treatment. We never imagined that 11 years later, we would have hit the £250,000 milestone. It just goes to show that even if you’re from a small seaside town like us, you can make so much change in the world when you have the support of family, friends and your community.
Getting over the line
We’ve had a couple of fundraisers recently that have got us over the quarter of a million-pound line. Our local pub put on a comedy evening. People donated raffle prizes, made hampers and the evening raised around £1,500.
George’s younger brother, John, has increased his fundraising too. After doing a skydive with five others, which raised a significant amount, he’s taking on the Great North Run this year. Along with his girlfriend and cousin, they’ve already raised around £850.
These fundraisers, as well as our twice weekly lotteries, that have around 118 people taking part regularly, are what pushed us over that £250,000 mark. Each event or activity on its own might sound small, but it all adds up – as does everyone’s support. People still stop us in the street and say, “Put this in for the charity.” There are collection pots all over the area. For such a tiny town, the generosity is overwhelming.
How fundraising has helped George
George is 22 now and doing well, but there’s always new challenges round the corner. Finding a job is going to be hard for him as he’ll most likely need to work from home.
Because we fundraise as a Family Fund, 20% of what we raise can go into a welfare pot for George, which has been invaluable. Disability equipment is so expensive and just knowing that money is there if he needs it is such a relief.
We’ve used it for a bigger profiling bed as George needed a double one, but you can only get funding for a single one. He also needed a new specialist mattress recently. Years ago, the council installed a wet room for him, but when the floor failed, we had to redo the whole bathroom. The welfare pot covered all of that. We’ve also bought things like an adjustable table for his room that works with his bed.
Hope for treatments
Most of the money raised goes towards funding research into George’s condition, and when it comes to treatments, we’re still hopeful. George was one of the first children to go onto a Translarna trial when he was just five. A couple of years ago, he had to stop because of side effects, but I believe it helped him quite a bit when he was younger.
There are times when it feels quiet on the research front, and then suddenly there’s so much happening again. Even if future treatments don’t benefit George directly, I hold onto the hope that they’ll help the younger boys coming through, which is amazing.
The future of our fundraising
I’ll always be grateful to Muscular Dystrophy UK, especially the Community Fundraising Manager in our area, Susanne, who has supported us endlessly over the years. And I’m hugely thankful to our community in this tiny seaside town who show up time and time again.
This journey started because we felt like we needed to be doing something after George’s diagnosis to change the future of Duchenne. I remember how shocked we were when we raised £46,000 in the first year of our Family Fund. Since then, fundraising has become part of our lives. From charity football events to fun runs, karaoke nights to sky diving – we’ve pretty much done it all.
Reaching £250,000 feels huge, but we won’t be stopping there. We’ve already joked that £300,000 will come next!
Follow George's Journey
The Pegg family – including George himself – have organised charity football events, fun runs, karaoke nights, taken on the worlds longest zip slide and completed a sky dive.
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Family Funds are a special way to support people close to you and a much wider group of people living with muscle wasting or weakening conditions.
