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Super Owain

This amazing eight year old guy is Super Owain!  We are so happy to have him on our squad all the way from the United Kingdom.  Owain brings with him to the TinySuperheroes squad the superpower of Noonan Syndrome, a genetic disorder that affects many areas of the body and can vary differently in how it looks from each person who has Noonan.

When Super Owain was four months old he was diagnosed with Noonan Syndrome ptpn11, which is the most common form of this syndrome that people are affected with. Super Owain’s parents were given the diagnosis at his cardiology appointment.  This came as a bit of a shock; the only information they had had been hurriedly printed off of the Internet.  From that moment Owain’s mom knew she would need to be the one to know and understand everything she could about the condition. As a baby, Owain was very sick — he had severe reflux and was labeled as failure to thrive.  At 8 month old Super Owain was having trouble gaining weight, so his mom took him to the hospital.  It turned out to be one of his mom’s hardest days, as she had to admit she could no longer manage to care for Owain without specialists’ help.  It was decided they would place a NG tube to try and increase the volume he was taking but it very quickly became apparent this was making things a lot worse.  So at 10 months old they did a barium swallow study which was explosive in nature and severe reflux was diagnosed. This led to Super Owain being referred to a specialist hospital and at 13 months old he had his first operation in which he had a Nissan Fundoplication.  This is where they wrap his stomach around the esophagus to prevent reflux and a g-tube was placed for him to get nutrients and calories.  Finally, with these extra superpowers Super Owain was finally able to thrive.

Since that operations Super Owain has gone on to have 14 more operations including tonsils and adenoids removed due to sleep apnea, teeth removal, several different types of feeding tubes, eye surgery and grommets/tubes being placed.  Super Owain is now at the healthiest he has ever been but still struggles daily with hypermobility, scoliosis, leg length discrepancy, and a minor congenital heart disease.  However, despite this and having undergone multiple operations, Super Owain is an incredibly brave and strong little boy; he has used his superpowers to give him strength and overcome everything that he’s faced with!

 

Super Owain has a range of superpowers with Noonan Syndrome.  Some of his superpowers are physical, others are related to learning and behavior.  Currently Super Owain is doing amazingly well, but everyday life is still a bit of a challenge for him.  Owain has hypermobility and scoliosis which causes him some daily struggles with everyday tasks.  Super Owain also has a couple other superpowers such as a global developmental delay and other learning difficulties which makes school and school-related activities a challenge.  However, he takes everything in his stride and uses his superpowers to make the most of what he’s got each and every day. Owain is a unique kid that not everyone understands.  However, this never phases Super Owain!  He is quirky, loud, and bouncy but when you have been through what he has he figures, why not do it with style?!

Super Owain is an absolutely incredible young man and an awesome part of the TinySuperheroes squad!  Super Owain’s brothers, Super Finlay and Josh and parents want people to see his inner spirit and courage and how no matter what he’s faced with he takes it in his stride and is able to get on with it.  Disabled does not mean Super Owain cannot do things! Owain competes in vaulting through Riding for the Disabled — he can stand on a horse’s back and perform a flair while the horse is moving with no signs of fear! He even performed alongside his team in front of 250 people! He attends Cub Scouts, has tried indoor skydiving and has a love of fire engines.  Whenever anyone asks what he wants to be it goes between a fireman, a doctor, a policeman and a train driver!  Who know what he will become — the sky is the limit for Super Owain! — but whatever he does he will do it in his own unique way.  Super Owain is surrounded by an amazing support network and his love for his brothers — and their love for him! — is unmatched! His brother Josh was eight years old when Owain was born and certainly was not expecting the chaos he would bring but has worked hard and never let the nights they’ve been parked at their grandparents or the Ronald McDonald House  get in his way.  Josh is now achieving his dream of training to be a chef!  Super Owain’s other brother Super Finlay has never known anything else than being an awesome super sidekick to Owain.  When asked about why Owain is different, Finlay can’t give you an answer, but by the way he behaves his superpowers of caring, patience and love are clear to see.

Super Owain is a unique superstar with superpowers that he uses to make sure nothing stands in his way. You can follow along with Super Owain on his Facebook page.  We are so thrilled to have this awesome guy on our squad!  Keep flying high Super Owain, we love to watch you soar!

2 replies
  1. Samantha Gillman
    Samantha Gillman says:

    I have the great fortune to be involved with this wonderful tiny superhero – I coach him at vaulting. He is the most amazing person who despite all his challenges brings life, laughter and joy to all he meets. He is well deserving of his superhero status as he is incredibly caring and kind as well as being an inspiration to us all.

    Reply

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