The Batten Disease Family Association (BDFA) is holding a ‘13’ fundraising event for the international Batten disease awareness day on 9th June. Batten disease is the common name for a broad class of rare, inherited disorders of the nervous system. All of them are fatal. The number 13 was chosen to reflect the fact that there are 13 types of Batten disease and it is hoped to raise £13k for the ongoing work of the BDFA.

My part in the campaign will see me undergo a personal fitness  challenge! On Saturday 5th June, I will run/jog/walk/crawl for the 13 miles from my front door along the Leeds & Liverpool Canal right into Leeds City Centre.

My inspiration for this challenge are my niece and nephew, Ellie Mae and Caleb Brownnutt, who both had CLN2 Batten disease. We lost Ellie Mae when she was 6 and Caleb when he was 9. Their strength and resilience amazed us all as a family.

The BDFA really is a lifeline to families affected by Batten disease and I want to raise as much as possible to ensure that the charity can continue to support them into the future. Please help me to strengthen the BDFA, to raise awareness of Batten disease and to remember two very special children.