Hopcyn's story

Hopcyn is one of the babies self referred to our specialist early intervention service and Family Support Programme. Hir mum, Carys, shares her story:

Our journey changed overnight. After watching Bwncath on Tafwyl, we went to bed and moments after the lights went out, I had an antepartum haemorrhage. Five chaotic hours later, Hopcyn was born via emergency C-section at 3:56am on 16 July 2023.

Hopcyn spent 13 days in neonatal intensive care due to dangerously low blood sugar levels. Some days we weren’t even able to hold him. We sat by his incubator all day, every day, besotted but bewildered. Nobody could explain what was happening other than, “He’s a boy. Boys are lazy.”

Once discharged, we tried to start our “normal” newborn life, but the months that followed were anything but typical. Repeated GP visits about Hopcyn’s development all ended with the same dismissive phrase. By 6 months, he wasn’t sitting; by 10 months, still no progress. Our physiotherapist recognised something wasn’t right, and we were finally added to the waiting list for a paediatrician. Even on his first birthday he couldn’t sit independently, yet we were still being told “no concerns.”

At 16 months, we finally saw a paediatrician, who first mentioned the likelihood of cerebral palsy. We immediately self-referred to Cerebral Palsy Cymru and were seen within a week. For the first time in 16 months, we felt heard. What we were experiencing was real — he wasn’t “just lazy.” Then came the words that will stay with us forever:

“He’s quadriplegic.”
“He’ll probably never walk unaided.”
“His trunk just isn’t working.”

Our world fell apart, but those words also fuelled our determination to help Hopcyn reach his full potential.

From day one, Cerebral Palsy Cymru supported not just Hopcyn, but us as parents. Within two weeks he began intensive therapy. Since then, he has had multiple physiotherapy blocks, attended baby classes and ‘Let’s Move Together’, and received ongoing support, including many emotional check-ins. The team has truly walked every step with us.

Today Hopcyn is a happy, chatty, sociable, beautiful boy. He uses specialist equipment, including an Inspector Gadget chair, standing frame, walking frame, and his beloved Wizzybug, and although he can’t sit up yet, he is absolutely incredible. He blows kisses to everyone he meets and brings joy everywhere he goes.

This journey has been a family effort. We give everything to ensure Hopcyn gets the therapy, appointments, swimming sessions, and daily support he needs. Linda, our Hopcyn’s Grandmother, is our backbone. And Cerebral Palsy Cymru has been the tribe we didn’t know we needed.

Before finding them, we felt isolated and scared. When Natasha, Cerebral Palsy Cymru’s Family Support Coordinator, also a parent of a child supported by Cerebral Palsy Cymru phoned simply to check in on us, not to book appointments, I burst into tears. For the first time, we didn’t feel alone.

Better Start, Better Future has given us an inclusive, understanding, supportive community, a safe place free from judgement, surrounded by families who truly understand.

We are currently participating in our Big Give Christmas Challenge, with just 7 days to raise £30,000 to help sustain and grow our critical family support programme, which provides emotional, practical, and mental health support for parents like Ashleigh. 

To make a donation, and get it doubled at no extra cost to yourself, please click the following link: Make a donation!