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Hello everyone!

With the Great North Run Half Marathon 2023 out of the way and ready for the next challenge. I am raising money for the Battens Disease Family Association, a charity that specialises in research and support for families diagnosed with this terrible, life-limiting neuro-degenerative disease. I will be on their charity running team for another event this year. The other event will be at the Royal Parks Half Marathon in London on the 8th of October 2023.

Battens disease is still quite unknown and often misdiagnosed with only a small number of children diagnosed with this disease each year throughout the UK.

Last year in October 2022 we received devastating news at the hospital that my beautiful 5 year old daughter Olivia was diagnosed with CLN2 Battens Disease (Late Infantile) and our hearts sank. It was something that I just didn't want to believe was true. CLN2 Batten's disease is a rare neuro-degenerative genetic disorder that affects approximately 30-50 children in the UK, with just 5-6 children diagnosed each year with this disease. For the first few years of Olivia's life her development was normal and healthy until we noticed signs of learning delays as well as the onset of epileptic seizures around age 3-4. This was shortly followed by a loss of speech, day-to-day activities and also her walking. Olivia's vision will also be gradually lost over time, as well as the onset of dementia usually by age 12. Olivia will eventually become fully dependant on us and will also require carer's for her daily needs and also a feeding tube. Unfortunately death will usually occur between the ages of just 6-12 years old. CLN2 is a cruel disease and It's heart breaking to see your child go through something like this and inevitably we know we are on borrowed time with Olivia which is why we are making as many memories as possible and also making sure she's comfortable throughout all of this. Olivia remains happy as of now with a huge smile on her face no matter what.

Olivia is currently undergoing Brineura Therapy at Cardiff Children's Hospital every two weeks for an infusion directly into her brain to try to slow the disease down and provide Olivia with "some" quality of life. Ultimately this treatment is not a cure but we are thankful for this opportunity to try and prolong her life as long as possible.

Having experienced all of the emotions attached to this disease I am excited to raise money for the BDFA to ensure they can keep providing amazing support to the families who need it most and keep up the fight into research and treatments to hopefully give children a better chance at life. One that every child deserves.

BDFA Website

Olivia has shown me that life is so precious, and no matter what you go through in life you can always face your challenges head on with a massive smile on your face. She is my motivation and the reason why I have decided to get into running and it is an honour to raise money for such an amazing charity as the support we have received has really helped us get our heads around things and they do a fantastic job with all of the other families too.

I will be running for Olivia, for the BDFA, for myself and for all of the families who have had someone close taken from them by Battens disease. I am incredibly thankful for this opportunity and I am fueled by everyone's support.

If you are able to, I would ask that you consider donating to support this cause. Even the smallest amount would be greatly appreciated. Whilst it is always difficult to ask for donations, I am confident that your money will be used in the best way possible to support families and children with Battens disease and also vital research. All of the proceed's from this JustGiving page go directly to the charity.

Thanks to everyone who has supported us and I will keep you updated throughout this journey over the next few months!

Daniel - Olivia's Dad