Wendy Watkins and her husband Chris Watkins, from Cottingham, East Yorkshire, welcomed their twins, Riley and Noah, now 13, into the world in March 2012 – and both were “happy and healthy”.
Doctors are baffled after twins were diagnosed with the same ultra-rare condition eight years apart.
Wendy Watkins and her husband Chris Watkins, from Cottingham, East Yorkshire, said their twins, Riley and Noah, 13, were “happy and healthy” when they welcomed them into the world in March 2012.
It wasn’t until five years later that school administrator Wendy, 43, and trainee teacher Chris, 45, noticed Riley displaying stroke-like symptoms, inlcuding slurred speech and drooping on one side of his face.
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Riley collapsed and was rushed to A&E, but it was a short while later that he was given a devastating diagnosis – a brain tumour and a “one-in-a-million” condition called moyamoya disease. In January this year, Noah started displaying exactly the same symptoms. Wendy thought, “this can’t be happening” as doctors delivered the same horrific prognosis for her second boy. Both of the youngsters have undergone two surgeries and are having regular check-ups. Wendy and Chris are still seeking answers about why they were diagnosed eight years apart.
Speaking about the rarity of the condition, and the twins’ separate diagnoses, Wendy told PA Real Life: “When it happened to Noah as well, we just thought, ‘This can’t be happening’.
“I think they are detecting more cases here … but people just don’t know about it. Even the hospitals, our doctors didn’t know what it was.”
The National Institute of Neurological Disorders and Stroke describes moyamoya disease as a rare, progressive cerebrovascular disorder caused by blocked arteries at the base of the brain.
In children, it says the first symptom is often stroke or recurrent transient ischemic attacks (TIAs), also known as mini-strokes, which are often `accompanied by muscular weakness or paralysis affecting one side of the body.
Wendy said the identical twins were born via a planned C-section in March 2012 at 36 weeks and, other than Noah initially struggling with his breathing and having jaundice, the boys were healthy.
It was not until April 2017 that “the journey” began – and it started while Riley, Noah and their sister Jessica, now 10, were in the bath.
“The kids were all in the bath together and Riley just had a funny look on his face,” Wendy explained. “We said, ‘Are you alright, Riley?’ And he didn’t say anything, so we took him out the bath and then realised that when we stood him up, he couldn’t lift his arms, he couldn’t lift his legs.
“Then his face looked like it was drooping on one side, so we rang the ambulance, panicking.”
Wendy and Chris said they ended up taking Riley to the A&E department at Hull Royal Infirmary (HRI) but were soon discharged, with doctors saying they “couldn’t find anything wrong”.
There were several other “strange episodes” in the following weeks, but one evening, while Riley was playing his great-grandfather’s harmonica, he displayed the same symptoms.
The couple took him back to HRI, where several tests took place, and in August 2017 they said they were told a mass had been found on Riley’s brain.
After a referral to specialists at Leeds General Infirmary (LGI), Wendy said they were told in September 2017 that Riley had moyamoya disease and the mass was confirmed as hypothalamic hamartoma, a rare, benign brain tumour.
Noah underwent similar testing at the time and was diagnosed with hypothalamic hamartoma too. “I was terrified,” Wendy said. “We found out, at that point, it was one-in-a-million (for moyamoya disease) in this country. There were no support groups in this country… and we just thought, ‘What is happening?’”
In January 2018, Riley had his first brain surgery at LGI, around a 75-minute drive from their home. Wendy said his surgeon rerouted a blood vessel from the scalp and attached it directly to the brain to create new pathways for blood to flow.
During this time, Wendy said the family were supported by Eckersley House, a “home from home” run by The Sick Children’s Trust charity, and they had their own room, just minutes from Riley’s bedside.
It meant the twins did not have to be apart and Wendy believes this helped to improve and speed up Riley’s recovery, describing it as “magical”.
“Eckersley House felt like a second home … and it took the pressure off completely,” Wendy said. “We are eternally grateful to them.”
The family stayed there again for Riley’s second surgery in April 2018 – and in the years since, they have kept in touch with the team and helped with fundraising events.
However, in January 2025, Wendy said “everything changed” when Noah started displaying the same symptoms as Riley.
“It was like a textbook Riley,” Wendy said. “His speech was off, he couldn’t write or read properly, and straightaway I recognised the signs. I thought, ‘This is a TIA, but it’s the wrong child’.”
They rushed Noah to hospital, where he was provisionally diagnosed with moyamoya disease that same day, and Wendy said she was “gutted”.
He had an angiogram, which checks the health of blood vessels, in February, and surgery was booked in April and May with Riley’s surgeon.
Since Noah was older at the time of his diagnosis, he has found it harder to process – but Riley has been able to support him throughout.
“Everything is looking good from a medical point of view, we’re feeling positive,” Wendy said.
“But Noah is still finding it quite difficult. He was anxious about going back to school and is conscious about his scars.”
Wendy said the twins underwent testing to try to understand whether the condition is genetic, but there was “nothing that evidenced this” at the time.
To this day, she said doctors do not know why the twins were diagnosed with the same condition eight years apart.
She said the boys have to avoid “blowing” things, such as instruments, and cannot participate in contact sports, but otherwise they are healthy and performing well at school.
Wendy and Chris want to raise as much awareness of moyamoya disease as possible and have started a support group on Facebook to help other families.
Wendy’s sister-in-law will also be participating in next year’s London Marathon to raise funds for The Sick Children’s Trust to “give back”.
The couple hope to get more answers in future about moyamoya disease, but for now the boys will continue having their regular check-ups and scans.