Published Tue, 2010-09-28 17:36; updated 34 weeks ago.
The family of a five-year-old girl from Sutton Coldfield, Birmingham who has to be bandaged six times a day is helping to raise funds for a charity to help youngsters with genetic disorders.
Annabelle Whitehouse, has a rare condition called congenital ichthyosiform erythroderma, meaning she can shed a layer of skin in 24 hours, unlike a child with normal skin who would shed a layer every 23 days.
The Whitehouse family is urging support of Jeans for Genes Day on Friday October 1,when people are invited to wear jeans to work in return for a donation to the charity which funds care and services for children like Annabelle and their families.
Paul and Sonia Whitehouse have been helped by the Ichthyosis Support Group, which is receiving a donation from Jeans for Genes this year to fund a national conference for affected families allowing children and parents to meet others in their situation and to speak with specialist medical professionals.
Annabelle’s condition affects one in 300,000 children. Unbeknown them, both her parents Paul and Sonia were carriers of a gene that meant they had a one in four chance of passing the condition onto their children.
As well as being creamed and bandaged bandaged six times a day, Annabelle has been on the receiving end of ignorant stares and comments.
"Once when we were on holiday someone asked them if we had put Annabelle in the microwave," says her mother Sonia. "We spend so much of their time each day taking care of Annabelle, we find it incomprehensible that people would accuse us of deliberately allowing her to come to harm."