A north-east family has raised more than £190,000 in the past year after their son was diagnosed with a rare muscle-wasting condition.
Faye and Nathan Whyte’s son Jacobi was discovered to have Duchennes Muscular Dystrophy (DMD) in September 2017 aged only four.
Since then his family, who are from Inverallochy, have raised more than £197,600 towards charity Duchenne UK, with the hope of a cure being found.
The disease affects young boys, resulting in the degeneration of muscles, which leads to the loss of the ability to walk between the ages of eight and 12.
It also significantly reduces life expectancy.
Mum Faye said: “Jacobi is great right now, full of life and humour.
“We have had a fantastic year of fundraising, and of course have raised over £190k.
“We have used some of this money to help fund three trials.”
A total of £15,000 has gone towards work on gene therapy with Evox Therapeutics, to investigate new ways of delivering gene therapy to Duchennes patients, and £10k to the Tamoxifen Open Label Extension Study, which tests the effectiveness of breast cancer drug tamoxifen for treating DMD.
A further £10,000 was also donated to the current clinical trial studying the effects of using testosterone on DMD sufferers.
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Faye said: “We hope these studies will push the search for a cure onwards.”
The family will continue to take part in fundraising activities to build on the current total.
Faye said: “My sister and I and our husbands are going to take part in the Duchenne Dash.
“We will cycle from London, go over the Channel and cycle to Paris, with it finishing at the end of the Champs Elysees.
“It’s exciting, three of us are beginner cyclists so it will be a massive challenge, but we want to do it for Jacobi.”
There will also be a Texas Scramble at Inverallochy Golf Club on Father’s Day and they want to create a new dessert-based cookbook after the first one sold more than 1,300 copies and raised £5,600.
It is hoped that more trials can be brought to Scotland through the DMD Hub, which is based in Glasgow.
Emily Crossley and Alex Johnson, joint CEOs of Duchenne UK, said: “We want to make sure patients in Scotland can take part in clinical trials.
“We are very pleased that Jacobi’s Wish is working with Duchenne UK to do this.
“We are hoping to shortly announce a significant investment in Glasgow to bring trials here through the DMD hub.
“We feel very passionate that all Scottish boys get access to the drugs and have parity with those in England.”