International Batten Disease Awareness Day

Sunday 9th June 2024 is International Batten Disease Awareness Day.

East Staffordshire resident Katarzyna has kindly shared how her and her son Michal’s lives have changed since his diagnosis in 2019:

“In June 2019 Michal was diagnosed with a rare genetic disease called Battens cln2 and at that time there was no treatment for this disease in England. Michał was still walking on his own, talking, eating, and seeing, however, the doctor told us that this type of the disease was progressing very fast in Michal’s case. We were worried and scared as we didn't really know what to expect. Days passed and we tried to look for any information about the disease to get used to it and get ready for the future.”

“The summer of 2019 saw NICE (National Institute for Health and Care Excellence) and the NHS allocate funds for Michał’s treatment. Later that year, Michal met the criteria and went in for brain surgery on October 30th. Michal was then put on medication to slow the progression of the disease”

“We have to be very vigilant and constantly monitor Michał because with Batten disease, you never really know anything. Every day is different and each day this terrible disease takes something away from Michał.”

Find out what you can do to help those living with the condition by visiting the Batten Disease Family Association's website.