A description from Jeffrey’s dad (Andrew Charlesworth).

“In January 2024 I will be taking on the ultimate challenge of climbing Kilimanjaro with two of my childhood friends, Daniel Clarkson and Chris Drinkwater. Kilamanjaro, the tallest, free-standing mountain stands at a staggering 5,895m above sea level. We plan to take the lemosho route over the course of seven days, five of which are ascent, and two of which are descent.

The reason for which we take on this challenge lies with my son (Jeffrey) who was diagnosed with an extremely rare life-limiting, neurodegenerative disease known as Batten disease. Batten disease affects approximately 140 children (in the uk) with as little as five children diagnosed per year. The disease means that children affected will lose their abilities, such as walking, talking, sight (and more) all of which are born with the ability to do and learn until the effects of batten disease takes it all away one by one.

On the 6th May 2021 Jeffrey was diagnosed. At this time he had learnt how to walk, talk, and play. Now, Jeffrey is 7 years old and the disease has taken away his ability to walk, talk, play, and most recently his sight.

Seizures (one of the first signs of batten disease) are becoming more frequent for Jeffrey. Some days are good and some days are bad but with the progression of battens, the worst is yet to come.

There are 13 variants of Batten disease, CLN1-CLN13. Jeffrey has CLN2, which is the only variant that children receive treatment for however, not to cure, but to slow down the regression so that we have more time to make precious memories with him. With all that said, we aim to not only raise much needed awareness for Batten Disease Family Association (BDFA) so that research can continue to find treatment for all variants, and continue treatment for CLN2 (which will be reviewed in late 2024), but to raise our target of £2000 so we can create memories with Jeff in the short time that he has with us.

Over the course of 3 months we will be training hard to take on Kilimanjaro. We will provide regular updates on our progress. Your support, encouragement, and the idea that Jeff and all the children affected with battens are fighting the ultimate fight daily, will be our reminder to keep going, and will push us to get through the physical pressure that we are inevitably about to endure.

Thank you so much for taking the time to read, and for all your support up to now. It means the world and more to us that we have a support network filled with friends, family, and even strangers who follow Jeffrey’s Journey. It means more than you will ever know.”