That’s my Beau - the one in 100,000

Rachel Snowdon and her six-year-old son Beau.

Rachel Snowdon and her six-year-old son Beau.

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COURAGEOUS Beau Snowdon is the ultimate little fighter as he battles a rare condition which affects just one in 100,000 people.

At just six years old, the Hartlepool youngster has faced up to more problems than most people handle in a lifetime. “He is such an amazing little boy,” said proud mum Rachel, 29, of Thornbury Close, as she paid tribute to a boy who has tackled a list of complications since he was just seven months old.

He was born in September 2006, weighing 7lb 1ozs at Sunderland Royal Hospital. Everything seemed fine for the first six months.

But at seven months old, he couldn’t lift his head and his worried parents turned to the health experts for help.

Since then, he has faced:

Being diagnosed with the genetic disorder Kabuki Syndrome which affects one in 100,000 people and can cause physical and mental delays;

Three hospital operations;

Three MRI scans which showed Beau was missing fibres in his brain;

Feeding difficulties;

Found to have a slight curvature of the spine;

Suffers from autism;

He has a sleep disorder;

He cannot talk.

But proud mum Rachel, who is married to 34-year-old design engineer Tim Snowdon, said: “He’s such a happy little boy and he amazes me how he has coped which what he has had to deal with, and what he deals with day in day out.

“He still needs a lot of support as he is unaware of danger and very clumsy. He also has autism which is quite a challenge for Beau and us as a family.”

She said Beau has come up with his own way of communicating. “He has his own sounds he makes and interacts the best way he can.

“He also has a sleep disorder and can awake from as early as midnight and that’s it, he’s awake for the rest of the day, I’ll go in with Beau in his room as he loves to snuggle in his bed with me but he does get frustrated as the morning goes on.

The former St John Vianney School pupil now attends Springwell School and mum admitted: “They have been fantastic and Beau adores the school and staff.”

She turned the clock back to the time when he was first diagnosed with his health problems.

“You do feel as though your world is falling apart but we were there for Beau and trying to be positive. He is a gorgeous little boy and we are staying strong for him.”

The couple also have a two-year-old son Chase and Rachel added: “On a day to day basis, there are a lot of challenges for Beau.

“And even though he is tired all the time from the sleep disorder, he always does the best he can.”

Rachel has nominated Beau for this year’s Pride of Hartlepool awards. This year there are 10 categories in which you can nominate the unsung heroes in the town.

Whether you know a fantastic fundraiser or a community stalwart, we want to hear all about those who deserve praise and have done something special.

Simply fill in the form on this page and send it to us or you can enter online or on tablet by following the links.

Details of how to get them to us are on the nomination form. The deadline for entries is February 27.

Anyone wanting further information about the Pride of Hartlepool Awards should contact the Mail’s deputy editor, Gavin Foster, on (01429) 239372 or email gavin.foster@jpress.co.uk