Family’s appeal to help terminally ill daughter explore the outdoors

A Swindon family is raising funds for a new piece of equipment to improve their terminally ill daughter's life.

Nine-year-old Addy Clarke is wheelchair-bound because she has Batten disease – a neurodegenerative disease which impacts her ability to walk, talk and see – which means her access is mostly restricted to paved areas.

Now, a new outdoor buggy could her help explore new places.

Addy’s dad Dave told Greatest Hits Radio: “As a four-year-old before her diagnosis she would absolutely love doing all the things that a neurotypical child would do, so going to farms and exploring around the woods and being able to play on the beach and playing in the sea.

“As her disease has progressed, she can’t necessarily get to those places that actually bring her to life. So what this brand-new buggy will do is, it will give her back the ability to explore these places that really make her come alive inside.”

The new piece of equipment costs more than £3,600.

Together with charity Newlife, Addy’s parents have now launched an appeal to raise the money, so she can once again return to her favourite places without risking injuries to the neck or legs.

Dave said being able to see Addy’s “inner joy bubble out” would give them, as a family, “immense joy in the time that she has left”.

“This new buggy will have the opportunity to go to the beach and over rubble and woodlands and things like that”, he added.

“This is a piece of equipment that is more than just metal and rubber – it is a lifegiving piece of equipment for us.”

Earlier this year, the National Institute for Health and Care Excellence (NICE) announced that Addy’s current treatment which slows the disease’s progression down will be continued.

However, any child diagnosed with Batten disease from 2026 onwards will not be eligible for the drug known as Brineura.

Batten disease currently affects between 30 and 50 children in the UK.

The appeal for Addy’s new buggy can be found here.