Ricky Runs Hull 10K to Raise Awareness of BDFA in Support of Daughter Emily

Ricky and his family received the devastating news on 20th January 2022 that their 13 year old daughter Emily has a life-limiting condition called Batten Disease (CLN3). Batten Disease is a rare neurodegenerative disorder that causes blindness; epilepsy; difficulties sleeping; the decline of speech; language and swallowing skills; and a deterioration of fine and gross motor skills that result in the loss of mobility. Unfortunately, there is no cure for Batten Disease and children suffering from this condition don't often live longer than their teens.

Emily has completely lost her vision due to this condition; she has issues with her speech and recently has started to show mobility issues too. Ricky says that 

"Emily is the kindest, sweetest, most gentle and loving girl that you could ever meet. She does not have a bad bone in her body and her happy nature can't help but make you smile. She loves to talk (we literally can't stop her sometimes) and she keeps us laughing every day. Her strength and resilience the last few years makes us beyond proud; she doesn't let this disease get her down and always has a smile on her face"

Any funds that Ricky races by doing the Hull 10K will be donated to the Batten Disease Family Association, they are the main charity advocating for children and young people with Batten Disease in the UK. They offer informed guidance and support families and professionals who work with them as well actively increasing awareness of the disease and funding future research to identify potential therapies and ultimately a range of cures. 

There are approximately 100-150 children, young people and adults currently living with an CLN diagnosis in the UK. There are 13 types of Batten Disease, each is classified according to the affected gene that causes it, such as CLN1, CLN2 and so on. Not only do they help children and young adults who have Batten Disease, they also provide invaluable help to their families and loved ones when they need it most including support after a child or young person passes away.

Ricky has set up a Go Fund Me if anyone would like to make a donation.