8 year old Girl who cannot sweat due to rare condition
- she could die on a hot day
- she is one of only 30 people worldwide known to suffer from Hay-Wells syndrome

For most families, playing on a sunny beach is the perfect day out. But for parents Wendy Shires and Richard Harpin, they know that a hot day could kill their eight-year-old daughter. Hannah Harpin, of Huddersfield, West Yorkshire, suffers from genetic disorder Ectodermal Dysplasia, which prevents her sweat glands from working. The Lower Hopton Junior and Infant School pupil is one of eight people in the UK and 30 worldwide known to suffer from Hay-Wells syndrome, a type of Ectodermal Dysplasia.

If she gets too warm she could overheat and suffer a fatal fit. Her parents ensure she is kept cool by carrying around cold water spray, ice-packs and a fan. Banson Toolhire manager Richard, 40, said: ‘We have to be so careful that she doesn't get too warm, we use cold, wet towels on her and we often soak her baseball cap in water. ‘She always sleeps with a fan on and will not go outside on warm days and when she is out in the garden she has to be really careful. ‘If we didn't do this, we just don't know what would happen, she would fit which could be dreadful.’

As a result of the disorder, Hannah barely has any hair, her eyelashes are sparse and her left eye has never properly opened. She has webbed toes, uses a Bone Anchored Hearing Aid (BAHA), a new type of hearing aid that enters its sound output into the cochlea by vibrating the mastoid bone, and also has no tear ducts. Her mother, 37, said: ‘As a baby, we would only know that she was upset because she wouldn't settle as she couldn't produce tears.
‘Just after she was born we found that we had so many doctors to deal with, we didn't know what to think.
‘She was trying to cry and they discovered she had a cleft palate, so they carried out lots of tests and found out that she had this rare condition. ‘Doctors said it is genetic, so it could have been in the family for as far back as 100 years. ‘We don't know of anyone that has it but it could be there. It is a lot more common in women. ‘Her school is much better at dealing with her condition now and they know how to look after her. ‘We are so proud of her and are so amazed in the way that she copes.


‘Hannah is starting to know herself, how to deal with her condition and she regularly asks for her water bottle. ‘She has started to ask a lot of questions about her condition and because of her hair sometimes she will ask, 'mummy I don't have cancer do I?' and then we discuss Hay-Wells syndrome. ‘Our other daughter Amelia, who is only four, sometimes asks if she is special like Hannah and I explain that they are both very special in different kind of ways.’


The couple, who are due to marry on Hannah's ninth birthday in two weeks, have had lots of support from the Ectodermal Dysplasia society. Wendy said: ‘They have been so helpful and Diana Perry who runs the society is more of a friend, she offers such fantastic support.

‘I was in touch with other families suffering with the disorder, but we have so much to worry about that often it is better that we just concentrate on Hannah.’ They aim to raise awareness of Jeans for Genes, a support group that helps people cope with rare genetic disorders.

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