This is Delilah who is 8 years old. At the age of 5 she was sadly diagnosed with Batten Disease CLN 8, which is a very rare neurodegenerative disease that has no treatment and is terminal.

Delilah used to be able to walk to pre-school, talk, sing along to her favourite nursery rhymes and enjoy being a normal happy little girl. But over the last 3 years, Battens has taken away her ability to talk, her control/movement of her body, her eyesight and sadly, even her laughter. The loss of her ability to eat orally means she is fed directly into her stomach losing the pleasure of taste. She also suffers from multiple and uncontrollable daily dystonic episodes and myoclonic jerks.

Still continuing to grow she is close to 30kg and just getting her into and out of bed is part of a daily physical challenge for her parents as well as being doubly incontinent.

Due to the nature of Delilah’s condition, she requires specialist equipment and facilities to ensure the best possible care and quality of life, in the short time she has left with her family.

In the near future and as funds allow her family would like to invest in equipment which cannot be provided by the local authority but that will provide a better quality of care for Delilah and greater interaction with her parents and sisters. This would include a more accessible profiling bed to provide position changing comfort and enable the family to spend more physically close time with her.

Family days out are few as these have to be carefully planned in advance to ensure wheelchair access and potential changing facilities are available. With limited time and especially funds available these can easily be forgone but are now valuable opportunities to provide cherished memories.

Any donations received will help make Delilah’s short but precious life as comfortable and memorable as possible for her and her family.