PARENTS
23/09/2015 11:02 BST | Updated 23/09/2015 11:59 BST

Mum Of One Of Britain's Tallest Toddlers Wants To Raise Awareness Of Rare Disorder: Sotos Syndrome

A three-year-old boy with a rare genetic disorder is one of Britain's tallest toddlers and stands at four foot tall.

James Whatley was born with Sotos syndrome, a disorder that causes rapid growth during the early years of life, and is twice the size of other children his age.

Whatley, who is now the same height as the average six-year-old, is one of 20,000 children born with Sotos every year.

Mum Michelle Whatley, 34, from Redhill, Surrey, is 5ft 11 and her husband Scott Whatley, is 6ft 4, so they expected their children to be tall, but they were still taken a back by the size of their son when he was born.

Mrs Whatley said: "He didn't look like your normal newborn baby. He had to go into special care because he was so big.

"We were all distraught. We didn't know what was wrong with him. We were all in hysterics and in floods of tears."

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James Whatley, three, with friend Jessica Wells, also three

James was delivered by caesarean weighing 10lbs 6oz and nearly 2 ft tall - the size of a six-month-old.

Describing what it was like after James was born, Whatley said: "When I got round to see him I saw this massive baby like next to these ones in incubators because they had been born early weight 800 grams and he was filling out his incubator.

"I thought 'oh my God what's wrong with him'."

The family had a two-week wait for James to get out of hospital after he was born on 4 December 2011, but had him home just in time for Christmas.

The disorder - caused by a mutation in a gene called NSD1 - has also given him severe learning difficulties and poor mobility as his muscles struggle to keep up with his bone growth.

After James was diagnosed with Sotos at nine months, he started speech and language therapy to help him express himself and now attends Brooklands School, a state special school in nearby Reigate.

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James and his mum

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Whatley said: "He's done brilliantly since he's been there, he has really developed a lot.

"A lot of people feel nervous at the early stages, it's awful it's all doom and gloom. But I look at him and he's so happy and he just gets on with it.

"As long as they keep progressing and you help them progress you can do it.

"Everyone has their own issues and Sotos is just another one we deal with but you just do it."

Now the family are doing everything they can to help him catch up with his peers.

James is already taller than his five-year-old sister Emma and is catching up with his seven-year-old brother Spencer.

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It is believed James will stop growing around when he reaches puberty, but it is predicted he could reach a height of 6' 7''.

His mum is calling for further genetic research so greater predictions about babies' conditions can be made, allowing their quality of life to be improved.

She also says she wants to raise awareness of Sotos syndrome: "So if you have a child you know what the future holds for it. You could know what to look out for and what decisions to take.

"Some people will stare at James because they are not used to his sort of condition. We hope this helps to raise awareness of children with additional needs."

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