When baby Riley came into the world 7 years ago, his parents couldn’t wait for him to meet his three older brothers. But as soon as Riley was born, his parents knew something wasn’t quite right. Riley’s breathing was a lot faster than most babies and he wasn’t putting on weight. His doctors initially diagnosed a serious infection and he was given oxygen but it was only after a biopsy that Riley was later diagnosed with interstitial lung disease.
At just a year old, Riley was referred to Tŷ Hafan. His parents just didn’t know what to expect and were shocked when doctors explained the criteria that every child must meet in order to be supported by Tŷ Hafan. That was the moment that doctors told Riley’s mum and dad that he was life-limited and may not reach adulthood. With that referral, they thought that it was the beginning of the end for Riley but they couldn’t have been more wrong.
“Like lots of people, we thought that Tŷ Hafan was a place where children go to die, but end-of-life care is just a small part of their work. It’s the rest of what they do that means so much to families like ours”, said Riley’s mum, Kat.
“Tŷ Hafan has been in our lives for the past six years and during that time, my other sons have been part of the siblings group. They’re 14, 12 and nine, and the support they’ve had has been just amazing. They all feel so comfortable and at ease with Anna, who runs the group and helps them over their difficult times. The younger ones do arts and crafts, music and loads of great activities and my eldest has trips away”, she added.
“It’s been a difficult time in the family over the past few years, with a separation and a bereavement of a close family member and my eldest son especially has been quite badly affected by it all. But due to the one to one support he’s had from Anna, he has gained so much confidence which he’s transferred to his school life too”.
“Any ill child needs happiness, and that’s just what Tŷ Hafan gives to Riley”
“At home in Maesteg, the local playground has so many hazards and a few times, Riley’s oxygen tubes have caught on the equipment when he’s played there. But at Tŷ Hafan, the playground is specially designed with wheelchairs and oxygen cylinders in mind, so it’s completely safe”.