My name is Rebecca and I have two daughters, Amy aged 2 and Laura just 4 months old. All three of us have the hereditary genetic disorder Treacher Collins – a syndrome which mainly affects the development of full facial features and causes deafness.
When my eldest daughter Amy was born, she had to be tube fed for the first 14 months of her life and have a procedure to open her left nasal passage. Amy will need three more operations to reconstruct her ears when she is four years old, a hearing aid implant plus cheekbone implants at nine years old and jaw surgery at 17 years old. Her baby sister will also have to go through the same operations.
Despite all of this, Amy is a happy, bossy little girl who is full of beans, loves being outside and adores bouncing on her trampoline.
I am very positive about the future and want Amy to be happy, have a good job, get married and have children. My parents were wrongly told that I would never walk or talk and that I would be sent away to a special school. I am determined to show my children that they can have a full and happy life.
Thanks to the money raised by Jeans for Genes this year a film will be produced for children living with Treacher Collins, to help them deal with bullying and isolation and show them that by coming to terms with their diagnosis they do not have to give up on their dreams.
Thank you so much for the difference you have made to families with all kinds of genetic disorders by taking part in Jeans for Genes Day this year. If you would like to help more children, like Amy and Laura, please make a donation.
I wish you all a wonderful Christmas.
Mum and Jeans for Genes supporter