Katie to make memories with her family

Hi my name is Sarah myself and a few friends are fundraising along with family members of this little girl Katie.

Help Little Katie with Batten Disease

This is Katie — a bright, beautiful little girl whose world has changed so suddenly in just a few short months.

In January this year, Katie began experiencing seizures. At first, doctors believed they were febrile seizures caused by a high temperature. But as more seizures followed, her family’s concerns grew. Finally, after months of tests, Katie was diagnosed with epilepsy on 14th May 2025.

Just as her family were starting to come to terms with the epilepsy diagnosis, Katie suffered another seizure. Further investigations were carried out, including genetic testing. Then, on 14th July 2025, Katie’s parents received devastating news — Katie has CLN2 Batten Disease, a rare and fatal neurological condition.

CLN2 Batten Disease is progressive. It robs children of their ability to walk, talk, see, and eventually, even to live. There is no cure. However, there is a treatment — an enzyme therapy that can slow the progression of this cruel disease and potentially give Katie more precious time. Sadly, this treatment is not cheap and Katie's parents are in the process of applying for funding but there is no guarantee they will be accepted.

Katie deserves more than that. She deserves hope. She deserves a chance to keep laughing, learning, and being surrounded by love for as long as possible.

We are raising funds to help support Katie and her family including her older sister who is just 7 years old — to fight for access to life-extending treatment, to create joyful experiences, and to make each moment count.

Please consider donating, sharing Katie’s story, or simply sending love and prayers.

Let’s give Katie the chance she deserves.