Wisbech boy, 12, on mission to help brothers living with rare disease
Arthur Dodkin's raised thousands of pounds in recent months
Last updated 16th Sep 2025
A 12-year-old boy from Wisbech hopes raising more than three thousand pounds can boost awareness of a rare genetic disease his brothers live with.
Arthur Dodkin's brothers Finley and Harrison were diagnosed with CLN3 Juvenile Batten Disease in 2017.
Since then, Arthur's family have raised thousands of pounds from their Pedal4Memories campaign, for the Batten Disease Family Association (BDFA) and Arthur's Gift.
This month, Arthur has completed a 105-mile cycle ride from Rotherham to Wisbech, as the South Yorkshire town was where the first gift through Arthur's Gift was sent to.
"I was very excited but exhausted at the same time," he said.
The Dodkin family helped set up Arthur's Gift, set up earlier this year, where siblings of children and young adults with Batten Disease can be put forward for gifts to be sent to them.
Arthur's initiative - like Pedal4Memories set up in 2019 - is also helping create life experiences for Finley, Harrison and the family.
"Lots of consultants and doctors we've come across have never heard of it, and now it's becoming more mainstream; the schools know, local families know," Sarah Dodkin, mum of Arthur, Finley and Harrison, said.
"We get lots of support and people say 'I'll be happy to share that'; once we've let our community know, it's hard to spread (the message) that further, but we're beginning to spread it that little bit further."
What is CLN3 Juvenile Batten Disease?
Batten Disease is a rare genetic disorder that causes waste material to build up inside brain cells.
Nerve cells are also affected, which can lead to vision loss, seizures and loss of speech over time and can appear in infants, children and teenagers.
The CLN3 disease is caused by mutations on the CLN3 gene, and the BDFA estimate four children are diagnosed with the disease each year in the UK and around 35 to 50 children are currently affected.
The BDFA believe there are between 110 to 150 people affected by Batten Disease in the UK.
In the last six years, around £60,000 has been raised from the Pedal4Memories campaign.
There is currently no cure for CLN3 Juvenile Batten Disease, but Sarah hopes with more awareness, the need for research can grow.
"We all try and do as much as we can and that can lead to more awareness, which means people going into scientific study will have maybe heard about Batten Disease and want to go down the research route," she said.
"We're not just doing it for us, but for other families as well; it's really important people are aware they can fight for better provisions, medical support and a wider understanding that families might be going through some tough times."