“My middle child, Darcy, was born with Wolf-Hirschhorn Syndrome,” says father of three Matt Evans.
“This means she has developmental delay. Darcy is five but is the size of an 18-month-old child. She was born with a cleft lip and palate which has been repaired. She has had to have heart surgery. She has cerebral palsy. She has Stage 2 kidney disease. She has seizures controlled by medication. She has severe reflux.
“Darcy has quite a lot to contend with.”
Matt, a vehicles trainer for the DVLA lives in Swansea with wife Fiona, Aubree, 7, Darcy and Oakley, 3.
“As a family Darcy’s condition affects us hugely. We can’t easily do the normal day-to-day stuff that your average family takes for granted,” he says.
“For example, a day at the beach for us doesn’t just involve packing up a couple of towels, buckets and spades. For us, it involves taking Darcy’s buggy, her syringes, feeds, and all her meds which we need to give her throughout the day. We can do things, for sure, but trips out are not as straightforward for us as they are for many other people.
“I can’t remember who suggested Tŷ Hafan to us. I think it was one of the community nurses. I never thought we’d be able to use it as we didn’t think Darcy would be eligible.
“But it turned out that she was. We went there for our first visit in 2019, all five of us stayed there as a family.
“We loved it. It feels like home from home. We feel normal at Tŷ Hafan. It feels like Darcy belongs there and we belong there as a family. It is so welcoming. On our very first visit Dave, the chef, spoke to us as if we’d been going there for years. When we got home our first thought was ‘We can’t wait to go back!’
“When we stay at the hospice it helps us all so much because Darcy has 1-2-1 care. For parents like us it’s a huge help as we get a bit more rest.
“We can also spend quality time with our other children, Aubree and Oakley. There’s soft play, a hydropool, a park outside. It’s like a little holiday for us.”
Matt was one of a group of Tŷ Hafan dads who recently raised almost £50,000 for the charity by climbing 10 mountains and cycling a section of the Taff Trail in 55 hours.
Matt says he was particularly inspired to undertake the gruelling #10nTaff challenge by the support he and fellow Tŷ Hafan dads get from the hospice as well as from each other.
“For me, it’s not just what Darcy gets from Tŷ Hafan,” he says. “It’s what we all get, including me. I benefit so much from being able to have conversations with other dads. We can share our experiences. This is stuff that I thought that I would never need, and I don’t speak with other mates about this kind of thing because they can’t relate to it.
“I think we’ve come a long way now – more men are talking about their feelings. I hate the phrase ‘man-up’.
“Gary Speed took his own life. I think to myself that if he had felt that he had just one person he could really talk to about anything, perhaps he would not have felt that was the only option for him.
“For us Tŷ Hafan dads, there’s no topic that’s off limits.”