This route has been launched to display creative items from families with Batten disease, and to celebrate life, in both its fullness and fragility.
Contributions are welcome and gratefully acknowledged.

A poem, originally written in Swedish by Ida Bernardsson when she was 19 years old, that simply and evocatively expresses her awareness of a changing life.

Two stories, written by Peter, a published author, who used to write each evening with his father, but now at age 12 years writes independently. Peter has juvenile NCL. This text is in the fairytale tradition: (1) There must be a problem, (2) Three things must happen and (3) Something must be won at the end of the story.

Fairytale - three frogs (pdf file)
The stupid troll and the fox (pdf file)

Online Gallery 'frederik-art' contains many sculptures by Frederik Egold (1977-2005) who had JNCL . One of his sculptures is displayed in the Hamburg Children's Hospital, Germany.

A picture, entitled 'Sunrise - Bringing light and hope to a new day', of the sunrise over the Bay of St Tropez. This was painted by Ben Pickering when he was 8 years old. Ben enjoyed holidays with his family in St Tropez each summer from a very young age. Every mark on the painting was made using his finger or a brush, with the help of Clare McQuade, his school helper. Ben had late infantile NCL. Yellow is the last colour that he saw, and the colour of hope.

A song by Josh Ward 'Flowers in the Wall' written in honour of fallen Australian soldiers and recorded with Bunya musician Mic Travers.

A True Story by Bee For Battens , Music: Lisa Hannigan, dedicated to Saoirse Heffernan.