Holly the dinosaur princess

Follow Holly's journey after her diagnosis of CLN2 battens disease

On Tuesday 26th March 2024, Holly was diagnosed with CLN2 Battens Disease. A life shortening and degenerative disease. Very rare. Only 30-50 kids in uk have it. Holly is the only kid in colchester.

Without treatment, Holly will only live until she is around 8 years old, losing her sight, speech, mobility, and everything. We are going down the treatment route. Which is not a cure but will slow down and stabilise the loss of basic skills, etc, and will add many years to her life, with expectancy around late teens.

The treatment is brain surgery to implant a port into the blood vessels at Great Ormond Street Hospital. Then, every 2 weeks, Holly has to go to Great Ormond to receive an infusion going straight into her brain. Which is a 4 hour drip. We are raising money to help with travel, hot chocs and toys to help keep this beautiful girl smiling and her parents awake for it all