Rosie is my beautiful little girl. She has Batten disease CLN2 and I am walking 100km in 24 hours to raise awareness of Batten disease and to raise funds for the BDFA.

Rosie is the greatest thing I have ever done and watching this disease take everything from her is indescribable. She was born and developed normally until around the age of three. We have always been extremely close. She is a daddy’s girl. She is my best friend.

The first clear sign of her condition was on 2 September 2024, the day she had her first seizure. Since then she has had more than 7,000 seizures, as of 15 March 2026. Batten disease has already taken her ability to speak, to eat, to walk independently and much of her mind.

Children with Batten disease all follow a similar path. They develop normally and then, as a toxin builds in their body, they gradually lose everything. They stop speaking, develop childhood dementia, go blind, become paralysed and lose the ability to swallow. Eventually they pass away far too young, usually between the ages of six and sixteen depending on whether they receive treatment.

It is an unbelievably cruel disease.

I hope this walk will help raise awareness of Batten disease and bring much needed funding to the BDFA, the only UK charity supporting the parents of children with this condition.

If you can donate, please do. If you cannot, please help by sharing this message.

The only treatment available to children with Batten disease is now being taken away from newly diagnosed patients. Why? It’s too expensive. This is heart-breaking. Rosie will receive her treatment for life, but newly diagnosed children and their families may be left with nothing. More awareness needs to be raised about this. It is simply wrong. We’re talking less than 50 children. The most vulnerable children in our society.

We should be judged by how we treat those in need.