Aimee-Lee’s story - Jeans for Genes

Aimee-Lee’s story

Aimee has no sweat glands so can overheat in summertime and in winter is at risk of hyperthermia.  Aimee is also affected by many of the other symptoms of Haywells such as absence of hair, fused eyelids whilst other affected children can also have frequent infections, irregular skin pigmentation, sensitivity to light and respiratory problems. Aimee wears a wig due to her absence of hair growth.

The Ectodermal Dysplasia Society is a Jeans for Genes Day 2016 grant charity. Our grant will help fund the creation of a set of guides for families on applying for Education, Health and Care Plans, a Blue Badge and benefits, including Disability Living Allowance.