We are raising money to give Lily Mae and her family memories that will last forever.

Lily-mae is diagnosed with a genetic brain disease called Huntingtons. This is usually something that presents in later life but unfortunately for Lily she has the very rare form that starts in childhood. She was diagnosed age 6 after years of noticing symptoms such as regressed learning, impaired speech, clumsiness and behaviour issues. The prognosis is approximately 10 years from onset but recently we have been told that the disease has progressed very quickly and she probably has around 12 months left. She can no longer walk or eat (peg fed) and she can only say a few words and experiences seizures as well as lots of pain from muscle cramps. People have likened the disease as having dementia, Huntingtons and motor neurone disease.