Christmas party, the Ectodermal Dysplasia Society

Many children with ectodermal dysplasias have physical features which set them apart from everyone else.  These are rare genetic disorders which often leave children with little or no hair, unusual teeth or no teeth at all, and many other symptoms.

Aimee-Lee tells Santa what she wants for Christmas

Children can experience bullying because of the way they look and they can feel very isolated.  They're often without sweat glands and miss out on playing with friends on a warm day. 

Their susceptibility to infection can also mean frequent  visits to hospital and lots of time off school.

An event like a Christmas party gives the children and their families a chance not to be different.  The children can also play in an environment that suits their needs.

Funding from Jeans for Genes helped to pay for Father Christmas to make an early appearance. 

Transports costs and accommodation can make it too expensive for families to enjoy events like this.  But 5 year old Aimee-Lee and her mum, Mel, were able to go to see him at the party in Cheltenham in Gloucestershire, because of the money you raised.

Mel says; "Aimee-Lee has a form of ED called Hay-Wells syndrome which means she's unable to sweat and has very few teeth.  Because over-heating can be so dangerous for Aimee-Lee, I'm nervous about using public transport.  But thanks to Jeans for Genes, the ED Society was able to provide an air conditioned car to take us to the party.

For Aimee-Lee, one of the hardest things for her is not having hair.  She just has a few tufts and it would be her Christmas wish to have long blonde hair. 

But she could wear her wig at the party without feeling uncomfortable.  And it was a chance for me to relax with other parents who know what it's like to raise a child with ED."