An Acton couple whose young daughter has lost the ability to speak, eat and walk independently after developing a rare neurological disease will walk 100km along the Thames in 24 hours next month (12 September 2026).
Max Bridge and Emma Vukic are taking part in the Thames Path Ultra Challenge to raise money for the Batten Disease Family Association (BDFA).
Their daughter Rosie has CLN2 Batten disease, a rare degenerative neurological condition. She developed normally until around the age of three, with the first clear sign coming when she had a seizure on 2 September 2024.
By 15 March this year, Max said Rosie had experienced more than 7,000 seizures. Her family now says the number has passed 9,000.
Max said: “Rosie is the greatest thing I have ever done and watching this disease take everything from her is indescribable.
“We have always been extremely close. She is a daddy’s girl. She is my best friend.”
CLN2 Batten disease causes children to progressively lose previously developed abilities and can lead to sight loss, paralysis and difficulty swallowing.
Max and Emma will be joined on the challenge by friends, relatives and parents from Rosie’s nursery.
Max added: “I hope this walk will help raise awareness of Batten disease and bring much-needed funding to the BDFA.”
Donations to Max and Emma’s fundraiser for the Batten Disease Family Association can be made through their JustGiving page.
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