A Lancing woman, whose son Connor was one of the first people cared for at Chestnut Tree House, is to complete the Inca Trail in aid of the hospice to mark what would have been his 21st birthday.
Zoe Gilbert’s journey with the children’s hospice in Dover Lane, Arundel, began after it was noticed that Connor was not meeting his expected milestones, such as crawling at around 10 months old.
They were referred for tests but after extensive investigations and hospital visits there was still no diagnosis.
Then when he was six, Connor began having seizures.
While in hospital Connor suffered aspiration, where fluid or objects are breathed into the airways, and ended up in intensive care.
Zoe was told that his brain stem was shutting down and that once the ventilator was removed, he would have just a few days to live.
It was at this stage that a doctor suggested Chestnut Tree House.
The children’s hospice cares for local children with life-shortening conditions, giving them the chance to do all sorts of things that children love doing and allowing them to live in the moment.
Zoe said: “I didn’t know what to expect of Chestnut Tree House and it was not all what I imagined.
“It is so family orientated. It’s a home.”
The hospice became their home for the next month as the whole family moved in, even Connor’s six-month-old baby brother.
During this time, Connor amazed everyone by improving and eventually coming off the ventilator.
He began going for home visits for a few hours at a time and finally after a month, he moved back home and started at school.
Chestnut Tree House continued to support the family with home visits from nurses.
Connor did well for a year, but sadly he had another aspiration episode.
Despite initial treatment in hospital he was moved to Chestnut Tree House that same day and tragically passed away the following morning.
Zoe said: “What we remember about Connor is his definite character, how people would comment on his infectious smile and how happy and fun loving he was.”
Her family are just one of hundreds that have been supported by Chestnut Tree House since it opened in 2003.
Zoe, who has become a firm supporter of the charity and regularly fundraises through different events, said it would always be close to her heart.
She said: “Chestnut enabled me to feel like a mum rather than just a carer/nurse/taxi service!
“I was able to stop thinking about when the next feed would be, or the next round of medication needed to be given and simply enjoy time with Connor and laugh and smile.”
To mark the year in which Connor would have turned 21, Zoe will take on her biggest challenge yet in support of Chestnut Tree House – completing the 52km Inca Trail trek in Peru.
She said: “I’ve always wanted to do the Inca Trail and what better way to raise money for Chestnut Tree House.
“I’ve never done anything like this before and I can’t wait to see the sights and for the whole experience.
“This year would have been Connor’s 21st birthday so that’s the perfect reason to do the trail.”
Caroline McCullough, clinical nurse manager at Chestnut Tree House, said: “Connor and his family were one of the very first families we had the privilege to know and support at Chestnut Tree House.
“We helped them enjoy precious moments together as a family.
“That’s what we do – provide specialist care and help parents simply be parents. To live for the now.”
Chestnut’s Inca Trail Challenge 2019 is fully booked, but there are spaces available for October 2020.
Anyone who has been inspired by Zoe’s story and is interested in signing up, visit www.chestnut-tree-house.org.uk/inca