Back in April 2017, we were giving our five-year-old twins, Riley and Noah, their usual bath. However, I looked at Riley and noticed something wasn’t quite right. He looked off-colour and wasn’t answering our questions. Suddenly, he collapsed. His legs gave way, he couldn’t raise his arm, and his speech became slurred. It passed within a few minutes, but we were shaken, not quite sure what had just happened. Me and Chris, my husband, took him to A&E at the Hull Royal Infirmary (HRI) but was soon discharged.
Noah and Riley Watkins.
There were a few more strange episodes in the weeks that followed. One evening, after playing with a harmonica, it happened again with all the same symptoms. We took him back to the HRI and that’s when the tests started. In August, we were called into the hospital and told that a mass had been found on Riley’s brain. Eventually, after a referral to specialists in Leeds, we were told he had moyamoya disease – a rare condition where the main arteries to the brain become narrowed or blocked. We were also told he had a benign brain tumour, and possibly more complications. It was terrifying.
Surgery, recovery and the power of family
In January 2018, Riley had his first brain surgery at Leeds General Infirmary, around 75 minutes from our home near Hull. His surgeon rerouted a blood vessel from the scalp and attached it directly to the brain to create new pathways for blood to flow. The surgery went well, but when Riley came round he was quiet, withdrawn, and so different from the bright, chatty little boy we knew. The turning point came when his twin brother, Noah, came to visit. It was like someone had flicked a switch – Riley was instantly brighter, more like himself. We honestly believe Noah’s visit sped up his recovery.
Finding comfort at Eckersley House
During this time, we were lucky to be supported by Eckersley House, a ‘Home from Home’ run by The Sick Children’s Trust. Chris and I had no idea something like this existed until someone mentioned it to us at the hospital. Chris had originally booked a cheap hotel to be nearby, but it was awful – dirty, noisy, and far from restful. When we found out we had a room at Eckersley House, it was such a relief. It was clean, calm, and just minutes from Riley’s bedside. Chris could stay close, do laundry, eat properly, and – most importantly – have Noah stay with him. It meant the twins didn’t have to be apart, and I really believe that made all the difference.
We stayed there again for Riley’s second surgery in April 2018. And over the years since, we’ve kept in touch with the team, gone to fundraising events and even helped out with some promotional work. We were so grateful for the support we’d received – I never imagined we’d need it again.
A devastating sense of déjà vu
Noah Watkins in hospital.
Then, in January 2025, everything changed. I was working from home when Noah came into the lounge. He said something I couldn’t quite understand, and as he walked out, I followed him. His speech was off, he couldn’t write or read properly, and straight away I recognised the signs. It was like watching Riley all over again. I called Chris, and we rushed him to A&E. Because of our previous experience, the hospital acted quickly. Within hours we had a provisional diagnosis: Noah also had moyamoya.
Thankfully, because we knew the signs and pushed for answers, things moved quickly. He had an angiogram – a type of x-ray used to check blood vessels – in February, and surgery was booked in April and May. Each operation took 8–9 hours, and once again we were lucky to stay at Eckersley House. This time, it really did feel like coming home.
A haven during the hardest days
Not only did Eckersley House give us somewhere to rest and recharge, it also meant we could bring Riley and our youngest, Jessica, who was only two when Riley had his surgery. This time around, she was very aware of what was going on and quite anxious – being close to her brother, and having somewhere she could play and relax, made a huge difference.
The house was a haven for us. On surgery days, it gave us a quiet place to wait, and somewhere to crash after exhausting nights. When our car wouldn’t start as we were leaving, the staff were brilliant – they brought us back inside, let the kids watch TV and helped us stay calm while we waited for recovery services. You can’t put a price on that kind of support.
Moving forward and giving back
The recovery has been tough, emotionally as well as physically. Noah has struggled at times, and Riley has had a few wobbles too, worrying about his twin brother and the emotions of reliving his own experience. But both are doing well now. We’ve got follow-up scans for Noah, and we’re monitoring Riley’s condition, but for now, no further surgery is planned.
The Sick Children’s Trust, and Eckersley House, will always be incredibly special to us. They’ve been there through two of the most difficult chapters of our lives. That’s why we’re so happy to give back however we can – from magazine articles and fundraising videos to helping my sister-in-law secure a London Marathon place for next year. We’ll do anything we can to raise awareness for what the charity does – because you never know when your family might need it.
Wendy Watkins, Riley and Noah’s mum
The Watkins family on holiday in Florida this summer.
