My daughter has been diagnosed with Dentatorubral-pallidoluysian atrophy (DRPLA), a rare genetic disorder that has turned our world upside down. Watching her go through this is incredibly painful, not just for her but for our entire family. DRPLA, characterized by ataxia, choreoathetosis, seizures, and dementia, affects quality of life significantly. Unfortunately, there is currently no cure for this debilitating condition.

The rarity of DRPLA means that it often goes under-researched, leaving those diagnosed with limited treatment options and little hope for improvement. More focus and funding on research could lead to breakthroughs in understanding and potentially curing DRPLA. Investing in scientific research not only aids those currently affected but also paves the way to prevent future cases.

Jessica has gone through this illness on her own and as she has only been recently diagnosed, the disease has progressed and she’s not well enough to go to America. I’m trying to get the trial over here to the UK so she can have a chance of trialing it and hopefully see results from it. The disease is rare but quite common in South Wales, and I want genetic testing to be done earlier than 18

Your signature can aid in driving the essential funding and focus needed to get the trial over here in the Uk. Join us in taking a step towards hope, progress, and ultimately, a cure for DRPLA. Sign this petition and help us to get Jessica on the trial in the Uk