Sweating Can Make This Boy Dies

For most families, playing on the beach and enjoying the sunshine is the perfect holiday moments. But for couples Shires Wendy and Richard Harpin, sunshine and hot days can be fatal to their daughter.Harpin Hannah, 8 girl from Huddersfield, West Yorkshire, was diagnosed with a genetic disorder ectodermal dysplasia, which makes the sweat glands fail to work.
Elementary school students is one of eight Britons and 30 people worldwide are known to suffer from Hay-Wells syndrome, type of ectodermal dysplasia.
When the weather is too warm, his body at risk of overheating which is the source triggers fatal condition. His parents make sure your body stays cool Hannah with sprays of cold water, ice and a fan.
Richard, 40, who works as a manager said, "We should be very careful to keep his body was not too warm. We put a wet towel and baseball cap often soak in the water."
"He always slept with the fan on and never leave the house during hot days. While playing in the park, he should always be careful not to sweat," said the father.
"If we do not do it, we do not know what will happen. He will have a terrible thing."
As a result of this disruption, Hannah had almost no hair, he has a thin eyelashes and left eye that can not be opened completely. Hannah also has webbed toes, using hearing aids are inserted in the ear bones (BAHA) to give voice to listen to the mastoid bone vibration, also do not have tear ducts.
His mother, 37, said: "As babies, we know when angry he can only stare because he could not produce tears. After birth we see so many doctors before knowing what happened."
According to doctors, a rare genetic condition that Hannah is able to have a family in a span of 100 years. "We do not know who left it, and this is more common in girls."
According to his mother, when I started to realize his condition, Hannah regularly always carry water bottles. Her daughter also had time to ask about the causes of hair loss. "He asked lots of questions and asked 'if I get cancer? We then discuss the Hay-Wells syndrome."
Although their first daughter had a rare genetic disorder, their other daughter, Amelia, 4, has not shown the same thing. With a rare condition, the couple received broad support, especially 'Jeans for Genes', a group that supports and overcome the interference caused by a rare genetic.At a meeting in Cheltenham which is scheduled Oct. 7, he will meet with two other girls with similar conditions.