Story
Help Us Raise Funds for Emilia’s Future: A cure for Ataxia-Telangiectasia (AT)
This October, Emilia’s dad, grandad, and close friends will take on an incredible challenge—cycling the Way of the Roses, a 272 km route from Morecambe to Bridlington. Spanning three days (Friday 3rd – Sunday 5th October 2025), this coast-to-coast ride passes through beautiful towns like Lancaster, York, and Burton Agnes—all to raise funds for a cause that’s deeply personal to our family.
Our story:
Our journey as a family began with the joy and excitement of welcoming our beautiful baby girl, Emilia, last October. We had a peaceful water birth at home and spent the first 12 days of her life in our new born bubble, soaking up every moment. But everything changed after Emilia’s heel prick test. At first, we were told she may have SCID (Severe Combined Immune Deficiency). That was heart-breaking in itself—but four weeks later, further testing brought even more devastating news. Emilia didn’t have SCID. She had something even rarer—Ataxia-Telangiectasia (AT).
An incredibly rare, life-limiting genetic condition, it affects the immune system, the nervous system, and many other parts of the body. As Emilia grows, we’ve been told she will gradually lose her ability to walk, talk, and swallow, and she will likely need a wheelchair by around age 10. AT is also life-shortening, and comes with a high risk of developing cancers like leukaemia and lymphoma, along with chronic lung infections that can cause long-term damage.
Now, at 9 months old, Emilia is thriving. She is hitting milestones, developing her own personality and bringing so much joy into our lives. We cherish every milestone, but we know the next few years are critical. By the time Emilia reaches 2 or 3, the symptoms of AT will become more apparent, and the challenges will intensify.
Sadly, there is currently no cure or treatment for AT, but we remain hopeful that one day, a breakthrough will change Emilia’s future—and the future of all those affected by this condition. Action for AT is a charity focused on funding research to find a cure, and we are committed to raising funds and awareness for their vital work.
We need your help. Your donations will go directly towards supporting ground-breaking research and clinical trials for AT. Researchers need our support to bring these projects from the lab to real-world treatments that could one day save Emilia and countless others.
While we continue to process Emilia’s diagnosis, we are trying to live in the moment, cherish each day, and hold on to hope. We are incredibly grateful to the charities that are supporting our family during this challenging time, and we know that with the right funding, a cure for AT is possible.
Please join us in our fight for Emilia’s future and for all families affected by Ataxia-Telangiectasia. Every donation counts, we are determined to make a difference.
Thank you
Emilia's family
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