Back in September 2025 Darcy was diagnosed with CLN2, a type of Batten Disease.

This is a rare degenerative genetic disorder affecting 30-50 children in the UK, the first symptom we experienced with Darcy was seizures. She received a diagnosis of epilepsy in January of 2025 and genetic testing revealed the cause of that to be CLN2. This horrid disease will eventually affect her vision, speech, cognitive abilities, coordination and mobility.

We are sharing our experience to raise awareness as it is not really known about at all.

We are extremely sad that Darcy is going through this but grateful we have the option to have a treatment at Great Ormond Street Hospital that will slow the progress of this disease and give her a better quality of life as there is no treatment for other types of Batten disease which all have very similar symptoms.

Please keep Darcy in your thoughts and prayers as we navigate this journey and do everything we can to keep our little girl with us for as long as we can

We have set up this go fund me to help us with the cost of travel, driving lessons, any adaptations Darcy may need in the future and making as many memories as we can.

Any donations are extremely appreciated ♥️