Harry and George’s story

Harry and George are two of the cheekiest, most sociable boys.

They love being noisy. The brothers both have a rare genetic condition. It’s so rare that there are only around 100 cases in the world.

They visit Acorns for the Three Counties for short breaks and respite stays, which gives their mum Liz and dad John time to recharge their batteries. Liz explains:

“I remember coming to Acorns for the first time with George and actually getting a little emotional. It was just so wonderful. Everyone was welcoming and they’d made George’s bedroom so personal to him.

“There was a little sign with his name on the door and it was so beautiful inside. The staff gushed over him too. It’s these little touches that really show how Acorns is a very special place.”

“Every single person at the hospice just cares so much. From the nurses, to the gardeners, to the chefs, they just want to help. You can tell that they would do anything for you and your child to bring a bit of happiness into your life.

“Knowing Harry and George are having a good time when at Acorns means my husband and I can relax and enjoy our time together whilst they are being cared for. We can just be us which is amazing.

Boy lay down on a large pillow with stars on it.

“We can use that time to be a couple and take our other son on trips, just the three of us. Something as simple as a lie in and staying in our pyjamas for the day just isn’t possible without Acorns there.

A young boy playing in bed at Acorns

“For me, life before Acorns felt quite lonely. We didn’t really have anyone to talk to who understood what it’s like to bring up a child with complex needs.

“By having an Acorns staff member there at the end of the phone who you can call at any time and ask anything has been a lifeline.

“Our Family Practitioner is always there for us and will help in any way she can. She always tells me not to hold back. To call her and ask for help if we need it. She has stepped in many times to help when things have been hard. She has helped bring feelings to a better place and has made stressful situations bearable.

“Some of these may sound like little things: a lie in, someone to talk to, a sign on the door. But to me and to Harry and George they are invaluable. It’s the little things that Acorns do that you didn’t know would change your life.”

Help support us

Hundreds of local babies, children and young people rely on Acorns Children’s Hospice for specialist 24-hour care and support. In turn, Acorns relies on people like you to fund the majority of our services. Your support with any charitable donation you can make is vital in helping us to continue the work that we do.

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For more information or for interview, photograph or filming opportunities, contact the PR and Communications team at news@acorns.org.uk.

Notes to editors:

Due to the sensitive nature of Acorns care services it refrains from using the words ‘terminal’ or ‘terminally ill’ in its press releases and public communications when describing the children who use Acorns and the conditions that they have. Instead, Acorns uses the words ‘life limited’, ‘life limiting’, or ‘life threatening’. Acorns kindly requests that you respect this in your communications when referring to Acorns Children’s Hospice. Acorns children have a lot of living to do. Thank you.