The mum of a five-year-old who she says is her ‘brave little lion’ has told their story for year’s Hope House Tŷ Gobaith children’s hospices’ summer campaign.
Little Callum Roberts’ face will be on the front of 30,000 envelopes landing through letterboxes this week with the goal of raising £75,000 for the charity through donations and its summer raffle.
As part of the campaign his mum Carrie Roberts has told how Callum and his twin brother Tyler were born prematurely at just 29 weeks old.
Devastatingly for their parents, Carrie and Gavin, tiny Tyler was stillborn, and Callum was diagnosed with a heart condition leaving the couple fearing the worst.
“We’d already lost Tyler and we didn’t think Callum was coming home from hospital,” recalls Carrie. “It was just a horrible situation for me and Gavin to be in.”
Carrie and Gavin were introduced to Hope House Tŷ Gobaith’s neonatal nurse at the hospital and she told them about the support the hospice could provide, such as respite care and symptom control.
Thinking back to that time, Carrie admits that it felt too soon to think of sharing Callum’s care with anyone.
“Honestly, I didn’t want to think about needing Tŷ Gobaith,” she says.
“I had fought for Callum to be born, and I just couldn’t stop thinking that a hospice was only a place for the end. I wasn’t ready for that. I would just cry just thinking about it.
“So, for a while, I thought I could do it all on my own. I couldn’t.
“You can’t go on forever without help. I was caring for Callum 24-hours a day, seven days a week, while Gavin was working to support our family. I was at breaking point and I literally couldn’t cope.”
Recognising she was struggling, Carrie, who lives on Angelsey, went to a wellbeing event that was organised locally. There she came across Hope House Tŷ Gobaith again, this time the hospice’s community nurse Nia was there to share information about all the services we offer children living with life-threatening conditions and their families.
“That meeting with Nia changed everything,” says Carrie. “Nia put me at ease and told me what Tŷ Gobaith was all about. We went through all the care Callum needed – and she understood everything. It was only then I knew I would be able to let Callum go for respite care.
“It takes me a long-time to trust people, especially when it comes to Callum. But I had that trust in Nia and, when I visited Tŷ Gobaith, I quickly built that with the other staff too. I will be forever grateful that the support we needed was there at the right time.”
For Callum’s first visit to Tŷ Gobaith, carers came to collect him from the family home in Amlwch, where he lives with his mum and two sisters Keira and Chloe.
Carrie was so nervous about Callum being away from home that she called every hour to check on her son. The nurses were happy to talk to her about how Callum was and what he was doing, which Carrie found really reassuring. Once she knew Callum was happy, she was able to try and relax, take a break from her caring role and recharge her batteries.
“Callum is five years old now and has been visiting Tŷ Gobaith for the last two years,” she says. “I still call when he is having respite, but nowhere near as much as I used to because I know the care team would call me if they needed to.
“But while he’s at Tŷ Gobaith I can do all the things that we all take for granted but which are impossible when you are a full-time carer. I can read a book, watch television, sleep, get my hair done or just sit and do nothing. They all sound reasonably simple things, but when Callum is at home all my time goes on caring for him.”
Carrie loves that Callum is able to enjoy new experiences at Tŷ Gobaith too – activities that are designed just for him with his abilities and condition in mind.
“He loves music and all the lights in the sensory room,” she says with a smile. “He loves banging drums and making noise with instruments and anything else he can get his hands on.
“The activity staff are great at finding things he likes to do and enjoys, and then I take what they’ve found and replicate it at home.
“He absolutely loves it at Tŷ Gobaith, he’s just living his life to the best. He has a smile that makes you melt and these big sparkly eyes that you just get lost in.”
Carrie says she knows that the future for Callum is uncertain, but she will be forever grateful that she met Nia at the time she needed Tŷ Gobaith most.
“Callum is the strongest boy I know,” she says. “I call him my brave little lion, because that is what he is. Despite everything that gets thrown at him he still smiles and gets on with it. He’s just amazing.
“And Nia is our angel. She really spent time getting to know Callum and understanding his and all of our needs. Nia knew we needed Tŷ Gobaith even before we did, and it is because of her that I felt we could try respite care. I’m so grateful that I did.”
You can help children like Callum, and their families, to live their best life by donating or entering the summer raffle, which has a £6,000 first prize at hopehouse.org.uk/callum
