Fundraising for Rosie's Batten CLN2 disease

On the 20th August 2025 our precious Rosie had neurosurgery. She has been diagnosed with an incurable metabolic disease called Batten CLN2 . Rosie already has childhood dementia. Within the next few years she will go blind. She will then loose her ability to swallow and become paralysed. It is thought she will pass away sometime between the ages of 6-16 years old.

From now until she passes away, every two weeks she will need an enzyme infusion into the fluid surrounding her brain. This will hopefully slow down the progression of the disease but the outcomes will be the same.

The past 3 years have already been extremely tough for Rosie. She is non-verbal and has been navigating the world with cognitive impairment and mobility issues. In three days it will be one year since she had her first seizure. She has since experienced close to 3,000.

Rosie is a beautiful little girl. She’s the strongest person we know. She’s extremely playful. Loves being outside, being around people and animals. Her thirst for life and exploring her world is never ending. More than anything she’s our brave cheeky monkey and we want to give her the best possible life, no matter how much she has left.

We have started this page as we have received so many kind offers of help from those around us. We want to make every day amazing for Rosie and try to give her as many adventures before her health deteriorates. There are also additional treatments we want to fund.

We have entered a completely new world and want to bring as much awareness as we can to Batten disease. Currently there is only one approved treatment for which funding ends in December. Rosie will qualify for this indefinitely but those diagnosed after will have no treatment.

Thank you,

Emma and Max