Our son was diagnosed with Batten Disease in January 2020, he currently travels from South Shields to Great Ormond Street Hospital every 2 weeks for treatment which prolongs his life. James was born a healthy little boy, no health issues that we knew of until he turned 3 and he started to suffer from horrendous seizures in june 2019, he was diagnosed with CLN2 by January 2020. Our whole world fell apart that day everything we had planned for our childrens future just vanished within seconds. Batten Disease takes abilities away from our children piece by piece they lose the ability to walk, talk, lose their eyesight, children with CLN2 dont normally live past their teens. An amazing opportunity came available for james to recieve enzyme replacement therapy which slows this awful disease down, he goes through a four hour infusion directly into his brain every 2 weeks. James is the strongest, bravest little boy we know, he fights this battle every day with the biggest smile on his face, hes got a sense of humour thats second to none, we will be forever the proudest parent to our little boy 💙

We have a daughter Gracie who is 10 and she wanted to do a fundraiser for her little brother, she wants to pedal 5 miles which is a massive target to set herself but I’ve got every faith she will absolutely smash it. Gracies been through things that no 10 year old should but we could not be prouder of her she is the best big sister to James ❤️ She will be riding from Latimers Seaburn to the amphitheater in South Shields on the 13th June starting at 1pm where everyone who is supporting her will meet at the finish. Some of Gracies friends have even offered to ride along with her for support, if you can help these amazing kids in any way we will be forever greatful 💙