Please support us both doing this trek together .Lucy was born on 3/12/94. She was our first child. We thought everything was ok till she failed a hearing test ,then after many hospital appointments she was diagnosed with Infintile Battens Disease, a degenerative neurological condition. We first heard  about Demelza in the early days when the hospice was being built, not thinking we would be able to use it ,but we did it was a safe haven where we could be a family and a rest from all the medical stuff we had to learn to do we could just be with Lucy and our first son James.Lucy passed away peacefully on 26/01/2000 with us all there Demelza gave us time to say goodbye and helped us with all the things we needed to do .We always said Demelza is a place for living and enjoying life but when the time came the support we had was just amazing.We went on to have another son Owen and a daughter Heidi who is doing the trek with me in memory of her sister Lucy .

We are planning to do some fundraising events watch out for them on social media.

Demelza provides expert clinical care and emotional support to children and young people with serious or terminal conditions, and their families, to live the best life they can. Working across Kent, South East London and East Sussex our specialist nursing, care, family liaison, therapist and counselling teams support families when and where it is needed most.This may be within our residential hospices in Kent or South East London, our hub in East Sussex, online, out in the community or in the family home.