Source link : https://london-news.net/new-hope-parents-of-children-with-rare-genetic-disorder-rally-community-to-raise-70k-for-critical-research/
The parents of two children afflicted with an untreatable genetic disorder have successfully raised £70,000 by embarking on a nine-hour walk through London.
In 2020, Mel Dixon, 46, and her husband Charlie, 47, residents of East Sheen in south-west London, received the devastating diagnosis that two of their three children—Tom, aged 15, and Rosie, aged 10—carry a mutation in the DHDDS gene.
Initially informed that there were only 59 confirmed cases globally—though this number has since increased to 80—they were heartbroken to discover that there was no available treatment or cure.
This neurodegenerative disorder leads to bouts of seizures, tremors, and developmental delays, and concerning the specific mutation affecting Tom and Rosie, Mel indicated that there are only seven identified cases around the world.
To raise funds for research into potential treatments and therapies, the couple hosted a charity event dubbed the “warrior walk” on June 8, which attracted 130 participants who traversed the Thames Path in London, covering distances of 40km, 20km, or 7km.
Reflecting on their experience, Mel described the nine-hour walk as both taxing and emotional, yet noted it was “incredible” to witness the community coming together for the cause.
Alongside their 13-year-old son, Harry, Mel and Charlie have initiated various fundraising events through their organization, Cure DHDDS, including a 50km walk in July 2023 and a planned 950-mile tandem bike ride in August…
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Publish date : 2025-06-12 15:48:00
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