Information about our services for patients and families.Our care services
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Katy was born in December 2001 with complex medical needs and her family describe her as a “tough little cookie” as she spent most of her life in and out of hospital.
“It wasn’t until Katy’s first birthday that we finally got a diagnosis. They told us that she had a rare chromosome disorder that causes severe development delay and uncontrollable seizures. She is the only person in the world with this diagnosis, that is why it took them so long to diagnose her condition”, says Katy’s Mum, Ella.
When Katy was six months old, the family were referred to their local children’s hospice, Chestnut Tree House. “We were offered a lot of support, from respite care to time in the hydrotherapy pool. But when I first heard the words ‘children’s hospice’ I just freaked out, I thought of it as the worst place ever. Katy just spent so much time in and out of hospital, when she got to go home, we wanted her to stay at home so we could spend time with her”.
“Near the end of Katy’s life, I remember one of the nurses telling me about the bereavement services at Chestnut Tree House, so, when she was in
hospital one day I decided to visit. I was simply blown away. It’s not miserable. It’s amazing. It’s beautiful. It’s joyful. It’s friendly. It’s sunny. I was so impressed”.
Due to Katy’s complex medical needs, the family were told that Katy wouldn’t live longer than six months old. “She’s such an amazing fighter and the nurses absolutely loved her”.
In October 2005 just before her 4th birthday, Katy sadly passed away at Great Ormond Street Children’s Hospital in London. At this sad time the family were supported by the bereavement services offered by Chestnut Tree House.
“That’s why a group of us have signed up to take part in the Castle Night Trek in memory of Katy. It’s a great opportunity to raise vital funds and awareness for an incredible charity that really helped us”.
Castle Night Trek is a challenging trek through the gardens and grounds of Herstmonceux Castle. Starting at 7pm, participants will walk from day to night, reflecting the 24-hour nature of the care and support that Chestnut Tree House offers to local children with life-shortening conditions and their families.
“Three of us have signed up so far and we’ve been going on walks and training together, it’s a great excuse to have a catch up with each other and get some fresh air. It’s something fun and different to do on a Saturday night with the girls. We’re really looking forward to it!”.
“If you’re thinking of signing up for Castle Night Trek, just do it! It’s an amazing cause and it will be so much fun!”.
To support Ella’s fundraising journey, visit www.justgiving.com/fundraising/ella-darby
Castle Night Trek will take place on Saturday 16 May 2020 at Herstmonceux Castle. The trek is open to everyone aged 14 years and over (participants aged 14-16 years must be accompanied by an adult). Sign up before Tuesday 31 March 2020 and early bird registration costs £20 per person.
Find out more and register at www.chestnut-tree-house.org.uk/castlenighttrek
For taking on a challenge. For local children and families. For the Now.