“My son Callum was just six when he died in December 2018,” says Amie. “He had Ohtahara Syndrome, a rare form of epilepsy, which meant he could have anything up to 19 seizures a day.”
Callum with auntie Kelcea
When she got Callum’s diagnosis, Amie didn’t know what Ohtahara Syndrome was, or what it meant for her son to have a rare, life shortening condition. She was in shock. “It was upsetting to know that Callum, my only son, could pass away at any time.”
Now, Amie looks after her Grandson Rio, who also has Ohtahara Syndrome. “Rio isn’t as severe as Callum. But I still prepare myself for the worst each day even though Rio is thriving.”
Rio, Grandad Paul and auntie Kelcea at a rugby match, posing with Rio Dyer
“There’s always someone who will sit and listen”
Amie sometimes finds taking care of a child with a rare condition isolating.
“It’s hard to talk to people about your child’s condition. I didn’t have anyone to talk to.”
Then she found Tŷ Hafan.
“I don’t know where I’d be without Tŷ Hafan. You can talk to anyone there – there’s always someone who will sit and listen to what you’re going through.”
“I haven’t got many friends. Lots of them disappeared after Callum passed away. My closest friend had a child pass away from a rare condition too. She’s more like a sister to me than a friend.”
Kelcea – auntie to Rio and sister to Callum – also gets a lot of support from Tŷ Hafan.
“My daughter Kelcea comes with us to the hospice. She’s always been made to feel welcome and she’s made loads of friends through SuperSibs.”
Amie says that without the help of Tŷ Hafan she and her family would struggle to cope.
“Tŷ Hafan is an amazing place. Our lives would all be a lot harder without it. We love it there – I don’t know what we’d do without it.”
Right now, 9 out of 10 families in Wales who have a child with a life-shortening condition are living without the support of a children’s hospice. This means that thousands of families like Amie’s are living their child’s short life alone and often without any support.
To deliver our life-changing services, we need your help. By donating, fundraising or volunteering, you will be making a real-life impact to those who need it. Find out more about how you can support us.
You can learn more about Rare Disease Day on their website.