The mum of a little girl with a rare, incurable skin condition that leaves her body ravaged by blisters has spoken of the invaluable support her family receives from East Anglia’s Children’s Hospices (EACH).
Darcie Game, who is ten months old, has a genetic disorder called Junctional Severe Epidermolysis Bullosa (Junctional EB).
It makes her skin extremely fragile, causing multiple blisters and leaving painful scars – erosions – scattered across her tiny body.
Darcie and her family were referred to EACH soon after her diagnosis and are regulars at The Treehouse, in Ipswich.
“EACH has been involved pretty much from the start,” said mum Alice, who is married to Ben and lives in Ipswich. The couple also have a four-year-old daughter, Tilly.
“It’s so warm and welcoming at the hospice, from the moment you walk through the door.
“Everyone has smiley faces, and you don’t feel it’s a sad place.
“It doesn’t give off clinical vibes, like a hospital or adult hospice which is full of wards and beds. Here, it’s very different and a comforting space to be in.
“The last ten months would certainly have been very different without EACH.
“There’s been so much support, and, without it, we’d struggle in all aspects of life.”
Darcie enjoys short breaks at The Treehouse, and both her and Alice are regulars at the hospice’s fortnightly pre-school group, TreeTots.
“Someone came round at the beginning to explain what support the hospice could provide for us – not just Darcie but myself, Ben and Tilly,” said Alice.
“I know it sounds awful, but I didn’t want to go down the hospice route at that point.
“As far as I was concerned, my child wasn’t dying, and I didn’t need to be referred to EACH.
“I couldn’t understand why they were trying to get involved, but now I realise it’s about so much more than end-of-life.
“When you think of an adult hospice, that’s the first thing you think of.
“Here there are short breaks for children, plus support for parents, different groups to attend, sibling days and counselling. The list goes on.
“TreeTots is perhaps the best example and appealed to me straightaway.
“I’d only ever been to one playgroup session with Tilly, because it was towards the end of Covid. Even then it was very cliquey – the other mums had established friendship groups, and no-one spoke to me.
“This time, during my pregnancy, I’d been determined to take Darcie.
“Then when she came out with EB, I knew that wasn’t going to happen. I had no idea if there were groups for children with complex medical needs.
“I’d never known any families or children that needed additional help, so didn’t know if such a thing existed.
“Then TreeTots came along, and I was like ‘sign us up’. It’s been wonderful. Darcie loves it, and I’ve made friends with other mums.”
Alice is also in the process of starting counselling sessions at The Treehouse, to help navigate her feelings about Darcie’s condition.
“Some days I’m OK, but other days I’m far from OK,” said the 26-year-old.
“Just knowing there’s the option of counselling here is helpful.
“I know I need it, and everything has happened quickly, which I’m grateful for.
“It would be so isolating without that support and just knowing there’s a friendly voice on the other end of the phone means a lot.
“Without it, who would I go to and what would I do?
“When I tell people about EACH, they say ‘I never knew that kind of thing happened in a children’s hospice’.
“That’s why I love talking about The Treehouse.
“It’s about enlightening people and myth-busting, to challenge perceptions about what life’s like here.
“It’s a nice place to spend time, with a calm, reflective atmosphere. I don’t feel scared here, and, for that, I’m so grateful.”
