On 19th June, Chris Smith, our Community Centre Development Manager is running 53 miles to raise funds for a local family, whose daughter suffers from Batten’s Disease. Addy is 5 years old. She’s amazing.
She has been diagnosed with a rare, terminal disease known as CLN2 Batten’s Disease. There are presently only 100 children worldwide known to have this disease.
Currently there is no cure for any form of the disease and therefore specialist symptom management and therapy is essential to assist in maintaining a good quality of life for children and their families. Holistic support for parents, siblings and wider family members is extremely important throughout their journey.
Following surgery, she will need to travel to Great Ormond Street Hospital to receive treatment every two weeks for the rest of her life, which may only be another 4-6 years. Heartbreakingly, the disease will limit her life to between early childhood and young adulthood at best.
Listen to Chris explain the project in this interview with Shirley Ludford.
You can read more about Addy’s needs and donate to Chris’s Just Giving fundraising page on the link below.
The church was lit with orange lights on the 9th June to raise awareness of Battens Disease