Skydive for Delilah

Hi my name is Edward, I am doing a skydive on the 1st July as a way of raising money for my cousin Delilah and to also raise awareness for batten disease.

my cousin Delilah came into this world like any other child seemingly healthy and with parents that could not be happier. Just like her older siblings Delilah began hitting her mile stones, she began to use words, found her ability to crawl then walk, all the fun things like feeding her self.

Not long after starting play group in 2020 it became apparent Delilah's progression had started to slow, noticing Delilah's progression was no longer considered in line with her piers my auntie and uncle began seeking advice, and assessments for Delilah, over a period of two years seeking answers Delilah's progression was no longer slowing but had begun regressing.

Finally In November 2022 my cousin Delilah at the age of 5 was diagnosed with Neuronal ceroid lipofuscinosis, a rare neurodegenerative disease which is more commonly known as Batten Disease. Most children with Delilah’s type of Battens normally only survive until late childhood.

This cruel disease has already taken Delilah’s ability to walk and talk and is very likely she will eventually lose her sight, be tube fed and have to deal with seizures.

There is currently no treatment for Delilah’s type of Battens - CLN8, so her family are treasuring every moment with her. As they do not know how much time Delilah has.

I am hoping to raise funds to help them with the cost of house adaptions for a wet room extension, and a specialist pushchair but primarily I would like to allow them to get to Disney with her two older sisters to make memories for them as a family to cherish forever.