The mum of an inspirational youngster with a rare genetic condition says changing her mindset and accepting support from her local children’s hospice has opened doors and created opportunities.
Levi Blood’s condition remains undiagnosed but has been likened to the rare, inherited neurodegenerative disorder Ataxia-Telangiectasia (A-T).
The 11-year-old is non-verbal, uses a wheelchair and has been receiving care from East Anglia’s Children’s Hospices (EACH) at The Treehouse since August 2024. He lives with his family in Colchester and attends Shorefields School, in Clacton.
By her own admission, mum Sam Jestico was initially reluctant to accept help – but is now glad she had a change of heart.
“To me, the word hospice meant only one thing and felt like conceding defeat,” she said.
“I didn’t want to go down that road and resisted as long as possible, until reaching a point where I knew I needed to change my mindset.
“I needed to accept the help being offered to me, as well as making a decision that would give Levi opportunities.
“So, that’s what we decided to do, and we haven’t looked back since.
“Everyone at the hospice is so incredibly friendly.
“It’s such a welcoming environment and already, in just over a year, we’ve created lovely family memories thanks to EACH. The best example was being invited to a special Dream Night at Colchester Zoo.”
Levi has enjoyed several days at the hospice and is building up to an overnight stay.
“He absolutely loves it, because there’s so much for him to do,” added Sam.
“He enjoys spending time in the book corner and sensory room, as well as being pushed through the woodland garden.
“As a family, we’ve also had fun in the music room – making lots of noise together – and it’s been an entirely positive experience. Much better than I first feared.
“It’s also given me a breather, knowing he’s safe and in an environment where he’s happy and looked after.
“It means I can relax and recharge my batteries before taking him home again.
“Because of Levi’s condition, we can’t just pop to the park or beach. It’s not as easy as that, and everything we do has to be planned and structured.
“It’s one of the reasons we love The Treehouse. I know it’s a completely safe space where everything he needs is there for us, without having to worry or think ahead. That means a lot.”
Sam had concerns about her son’s health when he was still a baby. Levi was unable to sit, roll over or hold his head up and she became worried. However, her concerns were batted away by hospital staff where they then lived in Wiltshire.
When Levi was eight months old, she made the decision to uproot and move her family to North Essex – a part of the world she knew relatively well, having grown up in London.
She took him to Colchester General Hospital and was immediately referred to London’s Great Ormond Street Hospital (GOSH).
“It was there they detected Levi had no immune system,” said Sam.
“Had I not made the move and got the help we needed, he wouldn’t be here with us now.
“He was also diagnosed with epilepsy when he was two and had to be tube-fed for much of his life, although he’s now able to eat solids.
“Despite his health, Levi’s the happiest, cheekiest boy. He’s always smiling and very rarely has an off-day.
“He’s got such a fun, slapstick sense of humour and nothing makes him laugh more than someone tripping up or falling over!
“He’s truly inspirational and my hero, because of the way he deals with his condition.
“He’s had so many hospital and medical appointments, and every time he faces another setback, he has the spirit to keep laughing. Nothing wipes the smile from his face.”
