My name is Sonia and my daughter Annabelle is 6 years old. She has a rare genetic skin condition called Ichthyosis. When Annabelle was born the delivery suite went very quiet and I knew something was not quite right. She was covered in a membrane that cased her body, squashing her ears, nose, hands and feet.
At first we had to cream and bandage Annabelle every hour, day and night, and eventually the membrane casing fell away and we were able to see her beautiful big eyes and lovely little ears for the first time.
A child with normal skin would shed a layer of skin every 23 days. However, Annabelle can shed a layer of skin in 24 hours.
Now, we cream and bandage her skin four times every day to prevent it from cracking and getting infected. It can be difficult seeing other people’s reactions to Annabelle the first time they see her but family and friends have been so supportive. Annabelle’s school have even got a special room where she can be creamed during the school day.
Thanks to funds raised by Jeans for Genes, this coming year the Ichthyosis Support Group are holding a national conference that enables families affected by Ichthyosis to get together and learn about new treatments from doctors and geneticists. It’s great for Annabelle to meet other children just like her too.
Thank you for the difference you have made to families with Ichthyosis by supporting Jeans for Genes this year.
Sonia
Mum and Jeans for Genes supporter