Harry and George’s story

Two brothers sit on a sofa at an Acorns hospice surrounded by toys

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 alittle 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.

“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.

“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.

A boy sits propped up on some cushions at an Acorns hospice. He is smiling
A boy sits propped up with cushions in an Acorns hospice sensory room. He has sensory coloured lights over his legs and other lights can be seen in the mirror next to him

“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.” 

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