Owain's adventures living with Noonan syndrome

Updated: Jun 5

I am Owain and I am 10 years old. When I was a baby they found out I had Noonan Syndrome. This means I have lots of health problems and have had 16 operations. As a baby I had to have a feeding tube which was taken out and now I have a big scar. Noonan syndrome can make things hard but my mummy and daddy always tell me to be brave and try hard.


"I love singing, dancing, horse riding and Cubs"

I love a good adventure and to try new things, I enjoy singing and dancing, my favourite tune is This Is Me. I have been horse riding for a few years and really enjoy vaulting which is like stunts on horseback.


My other favourite thing is Cubs, I have been a Beaver and then became a Cub and will next be a Scout. In cubs we do lots of fun things such as climbing, trips away and I now a seconder and help with the younger Cubs. ​



Noonan syndrome can make me sad sometimes because I am different to other people, but I have got to meet lots of other people with Noonan syndrome at our families days, which makes me happy and thankful for being able to meet with good friends that are just like me.


My family which are my mummy, daddy and my two brothers Josh and Finlay, are my sidekicks and they always push me to try anything at least once.


I say that my Noonan syndrome is my super power like superman gets his power from the sun.


Last thing I would like to say is for the doctors to keep asking questions and looking for answers so we can get the help we need so we can continue to thrive.


"Don't forget to be kind and keep smiling!!!!"

Pictured: Owain and his brother Finlay having fun together

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