Portrait: Ryley

Ryley had a stroke in January 2021, aged 9 years old, causing right sided weakness and speech difficulties.

A little bit about Ryley 

Ryley had a stroke in January 2021, aged 9 years old, causing right sided weakness and speech difficulties.  

Ryley spent time in Noah's Ark Children's Hospital, Cardiff, it was here where he had intensive investigations and started his rehabilitation process. Since discharge, his rehab programme has continued with ongoing support from the wonderful therapists at Powys Teaching Health Board.  

Ryley’s recovery support 

Ryley's therapy consists of Speech & Language Therapy, Occupational Therapy and Physio Therapy – he also has involvement with various neurologists and neurosurgeons. 

Physical exercise is such an important part of his ongoing rehabilitation and Ryley wanted to do something which would not only support his rehabilitation but benefit the lives of other children in his community.

So in 2021, he set about completing distanced-based exercises in order to virtually climb Mount Everest and raised a fantastic £7500 for his local Play-park. This led to an award from the local High Sheriff in recognition of great and valuable services to the community (pictured above)  

At the time of starting his fundraising journey the cause for Ryley's stroke was unknown.

However, Ryley continues to amaze his family and friends with the continued progress that he is making on his road to recovery, along with striving to raise awareness for Childhood Stroke along the way.

The diagnosis of Moyamoya  

In Sept 2021, Ryley had a TIA, which prompted further investigations. This led to a diagnosis of Moyamoya disease in Feb 2022.  

Moyamoya is a rare progressive disease which effects 1 in 100,000,000 people.

Due to the severity of Moyamoya, Ryley was at significant risk of having further strokes and was put forward for urgent brain surgery. In Feb 2022, he had an Encephaloduroarteriosyangiosis "EDAS" procedure , which was a very difficult time for him and the family. He has continued to have multiple TIAs since the surgery and his physical activity and emotions must be restricted significantly to reduce the risk of stroke. It really has been life changing as Ryley has always been a very active and sporty child. 

The recovery process has been more than we had anticipated, however Ryley continues to stay strong, resilient and focused on his road to recovery.

What the future holds 

We are fighting for Ryley to receive the best possible care and hope to be under Great Ormond Street, London soon. Until then, we have involvement from Cardiff, Bristol and also Boston Children's Hospital in America. As a family, this has been and continues to be a very challenging time. Mum, Kate, has recently made the difficult decision to give up her role as a nurse manager, in order to look after her son. 

It has been very refreshing finding SameYou. We agree, there is simply not enough support for survivors and their families.

Ryley’s wonderful poem: "My Name Is Ryley" 

My name is Ryley, I’m aged 10 now, did you know?

I found out I have Moyamoya not all that long ago.

The strokes have been hard, there’s so much you don’t see,

But don’t worry about that because I’m still Ryley, I’m still me.

Sometimes I can’t concentrate, I dislike that the most!

I try to listen, take it all in and find words, but I feel silent, like a ghost.

Not being able to run around is so hard and boring, I can’t wait until I get the all clear, so I can run around exploring.

The hospital visits, scans, and surgery, all make me so tired,

Having needles, hearing words I don’t understand and being hooked up to wires…!

Loud sounds and sudden changes are both difficult for me, but I’m really going to beat this,

I’m Ryley, This is me!

Advice to other survivors 

We are a family who are passionate about raising awareness for ABI and the complexities this brings. Please never give up seeking out the best advice, find a consultant you trust and understands your circumstances and most importantly, never give up!

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