Creativity

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.