Newspaper article The Northern Star (Lismore, Australia)

A Challenge in the Heat of the Moment; Mother Turns a Page in Search for Medical Answers

Newspaper article The Northern Star (Lismore, Australia)

A Challenge in the Heat of the Moment; Mother Turns a Page in Search for Medical Answers

Article excerpt

Byline: Richard Forbes news@northernstar.com.au

FOUR children under eight years of age can have their moments, but when three of them have a major medical condition, the simple life can become challenging.

Sebastian, 7, Matthew, 6, and Nathanael Kelly, 4, of Lennox Head, have hypohidrotic ectodermal dysplasia (HED), a rare condition that affects hair, nails, skin, sweat glands and teeth.

Their mother, Tarja, said their sister is apparently unaffected.

"Siobahn seems to have escaped HED because she's not exhibiting any signs and symptoms," she said.

"Sebastian was 15-months-old when he cut his first tooth, it was quite pointed. That is one of the first signs of HED. I remember when as a newborn, he was burning up with fever and we decided to take him to hospital. Once he was in the car with the air conditioning on, his symptoms disappeared. But we didn't know that this was also a sign.

"Because the boys can't sweat, their bodies can't adjust to heat variations. …

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