Mum Fears All Her Children Could Die Before 35 After Genetic Test Results Were Missed Friday, May 22, 2026 genetics friedreichsataxia autism diagnosis childhood nhs genetictesting caregiving raredisease family Sarah Bingham, a 39-year-old mother from Weston-super-Mare, is grappling with the devastating news that her 14-year-old son Caleb has been diagnosed with Friedreich’s ataxia, a rare and progressive genetic condition that … Read More
Parents Honour Daughter’s Memory Through Inspiring Fundraising Walk Monday, September 8, 2025 rettsyndrome fundraising hospice charity children memorywalk clevedon support raredisease community A family from Weston is honouring their daughter Phoebe’s memory by participating in the upcoming Moonlight Memory Walk in Clevedon, an event dedicated to raising funds for Children’s Hospice South West (CHSW). Phoebe, who … Read More
Bath Dad’s Inspiring Mission to Raise Awareness for Ultra-Rare Genetic Disorder Affecting Only 3,500 Worldwide Monday, August 11, 2025 phelan-mcdermid genetics raredisease awareness fundraising charity disability autism cureshank jenson Tom Giles, a father of three from Bath, has undertaken an extraordinary journey to raise awareness about Phelan-McDermid Syndrome (PMS), an ultra-rare genetic condition diagnosed in just 3,500 people worldwide. His son … Read More
Bath Dad's Epic Run to Raise Awareness for Ultra-Rare Phelan-McDermid Syndrome Monday, August 11, 2025 phelanmcdermid genetics raredisease awareness cureshank bath fundraising autism genetesting charityrun Tom Giles, a father of three from Bath, has undertaken an extraordinary mission to raise awareness about Phelan-McDermid Syndrome (PMS), an ultra-rare genetic disorder affecting only around 3,500 people worldwide. This … Read More