The Rainham toddler who has to play in the snow
Like many children his age Rainham four-year-old Bailey Beeson is itching with toddler energy - but unlike most kids, playing could kill him.
The toddler was born with no sweat glands, which means he is at risk of fatally overheating, and can only play properly in the snow. The tot and his twin sister Tayla both suffer from a rare genetic condition known as Ectodermal Dysplasia (ED), which affects the development of teeth, hair, nails and sweat glands.
It means Tayla is missing all her bottom teeth, and has a poor immune system.
But Bailey’s syndrome is more pronounced, and he already wears dentures, having lost all but one of his teeth.
“Tayla is a girly girl, she loves her dolls,” said mum Tracy. “Bailey is really no different to any other boy. He loves playing with his cars and loves to play in the garden. His favourite thing is the snow. He can play in it for hours as there is no chance of overheating, although he has to be watched in case he gets too cold.” The twins’ older sister Gabrielle, 11, and mum Tracy, 39, also have mild forms of the condition
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Now the family, including HGV driver dad Trevor, 41, from Wentworth Way, wants to raise awareness of children’s genetic disorders with charity Jeans for Genes.
They are encouraging people to wear their jeans to work or school on October 7, in return for a donation.
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The twins’ are due to start mainstream school in September.
“I worry a lot about Bailey,” says fulltime mum Tracy. “He could overheat at any time and doing sports at school could kill him. I have make sure the school knows what to do and how to keep him cool. He wears a vest and shorts in all weathers.”
Tracy and Trevor had no idea ED was in the family until after the twins were born and they had severe difficulty teething.
Genetic testing finally confirmed the condition.
To donate go to: www.jeansforgenesday.com.
For more info on ED go to: www.ectodermaldysplasia.org