Why we are fundraising
Herbie is 6 years old and an amazing imaginative and charismatic boy; he loves Lego, Spider-Man, play-dough and routinely beating me up! He is in every way a perfect angelic (but hell-raising) 6 year old!
In 2021 we received the devastating news that Herbie has a muscle-wasting disease called Duchenne Muscular Dystrophy (DMD). DMD is a very rare disease (in the whole of the UK, only around 2500 people have DMD) and it is caused by a genetic mutation that prevents the body from producing a protein called dystrophin. Dystrophin acts like a shock absorber when muscles contract – without dystrophin, muscles become more and more damaged and weakened. Over time, children with Duchenne will develop problems walking and breathing, and eventually, the heart and the muscles that help them breathe will stop working. Duchenne is an irreversible, progressive disease.
The purpose of this campaign is to raise funds to buy Herbie a good quality wheelchair that will last him for the next 4-5 years and help to maintain his quality of life for as long as possible. All funds collected will be applied toward the £6k price of the wheelchair. If we raise any more than is needed, the remaining funds will be donated to Whizz Kidz who have helped us so much with Herbie.
Right now Herbie has a basic wheelchair that he uses when his legs get tired. Over time he will become more reliant on a wheelchair, and later in life he will switch to a powered chair and use it full time. The NHS are fantastic and have been so supportive during this period but with their limited funding, Herbie is only supported with the most basic of equipment. His wheelchair today is adequate, he calls it 'Speedy' and his friends love the flashing LEDs his Grandad and I glued on! But it would not work on the beach or in the woods which really limits where he can go. It is also quite heavy, which will limit the amount of time he can be independent and self-propel.
Any donations will be gratefully received.
To help get to our fundraising goal of £6k and to raise further awareness of DMD, we are running the Help 4 Herbie Challenge in March 2024.
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