An Acton family is preparing to take on the Thames Path Ultra Challenge on 12 September to raise awareness of their daughter’s devastating disease that blinds, paralyses and ultimately takes the life of young children.
39‑year‑old Max Bridge and Emma Vukic will walk 100km in 24 hours along the Thames Path fundraising for the only UK charity dedicated to those affected by the condition. Their daughter Rosie lives with the CLN2 Batten disease, a rare, degenerative and devastating neurological condition.
Rosie developed normally until the age of three when the first clear sign of her condition came in September 2024, when she experienced her first seizure. Since then, she has had more than 9,000 seizures and Batten disease has already taken her ability to speak, eat, and walk independently, as well as much of her cognitive function.
“Rosie is my beautiful little girl,” Max said, “She’s my best friend, and I love her more than anything in this world. Watching this disease take everything from her is indescribable. She has always been a daddy’s girl; we’ve always been exceptionally close and seeing the little girl we know gradually disappear has been unimaginably difficult.”
Children with Batten develop normally before a toxin builds in their body, causing progressive and irreversible loss of abilities. They stop speaking, develop childhood dementia, go blind, become paralysed and lose the ability to swallow. Most children pass away between the ages of six and sixteen, depending on whether they receive treatment.
Max and Emma are raising money for the Batten Disease Family Association (BDFA), the UK’s only charity supporting families affected by Batten disease. The only approved treatment currently available, which slows the progression of CLN2, is no longer being offered to newly diagnosed children due to cost. Rosie will continue receiving treatment for life, but future families may be left with nothing.
“The only treatment available is now being taken away from newly diagnosed patients because it’s too expensive, it’s heart‑breaking. We’re talking about fewer than 50 children, who are the most vulnerable children in our society. We should be judged by how we treat those in need.”
A gene therapy clinical trial is expected to begin this year, which could be transformative for children diagnosed early enough but for children like Rosie, those cognitive skills simply cannot be restored. This trial is in its very early stages but hopes are understandably high.
Max and Emma will be walking with a large group of friends, family and parents from Rosie’s nursery, on the 100km endurance Ultra Challenge.
“Rosie is surrounded by people who love her, having them walk with us means the world. The cruelty of Batten disease is beyond words. I hope this walk will help raise awareness of Batten disease and bring much‑needed funding to the BDFA.”
Max’s JustGiving is open to donations at: https://www.justgiving.com/page/max-bridge
You can still sign up to this year’s Thames Path Challenge and 2027’s entries are now available, at: www.ultrachallenge.com/thames-path-challenge
