01 April 2022
My daughter was born with a large café au lait mark on the back of her neck, which we thought was a large birthmark.
However, over time, more café au lait marks appeared, covering a large portion of her little body and after numerous tests, she was diagnosed with NF1.
We had never heard of Neurofibromatosis before and once the doctor had described the medical problems related to the condition and advised there is no cure, naturally we were really worried about how this would affect our baby.
Seven years on, she is a beautiful, confident and happy girl, who is doing amazing at school. We take every day as it comes and answer any questions she has along the way.
There are approximately 25,000 people living with Neurofibromatosis and there is still no cure. Parents living with NF1, have a 50% chance of passing the gene on to their children, so it’s important to raise awareness and fundraise to support families and develop science.
Andrea and I will be skydiving at the end of April for Nerve Tumours UK. If you would like to donate for all of our NF warriors, here is our fundraising page: