William & Andrew’s NF1 Story

My son, William  was born with NF1. We found this out around 6 months old with a normal visit to the midwife. They mentioned the small brown spots on his body could be NF1. After some tests it was confirmed he had NF1.

As you can imagine, this was a big shock for the whole family; we did struggle to come to terms with this. However, with the help of Nerve Tumours, especially the NF1 nurses, we've received the help we needed.

The nurses have advised us on how best to support William along with all the medical and appointment support we’ve needed over the years. We feel lucky to have so many helpful people who are involved with Nerve Tumours UK. William is doing really well, especially with his sports. He loves playing football, swimming and recently got his gold certificate in life saving. He also attends sea scouts. One of William’s passions is scuba diving. Last year he completed his open water and dry suit qualification with Morecambe Area Divers. William has found school work difficult in the past. However, he has settled really well into high school, and last year won hockey player of the year along with some outstanding learning awards. 

My wife Libby and I have raised money for Nerve Tumours UK in the past. We both completed the Manchester 10k and also organised many fundraising evenings.

The London marathon will be the biggest and hardest fundraising event we’ve done. 

We are both doing lots of training, both in the gym, and running/wheeling the local areas. 

As you can see in the pictures, I’m a wheelchair user. When I was 17 I was involved in a car accident which left me paralysed from the chest down. I was very lucky to have my family supporting me during this time.

After 6 months in hospital I was able to begin my new life in a wheelchair. As you can imagine, it was very difficult for me as this was a life changing event, but I had a lot of determination to make something of my life. I was able to return to work, get married, and have two amazing children. I am very sporty and have played wheelchair basketball and wheelchair curling along with adaptive scuba diving, which I love doing with William. I’m hoping, as William grows into a young adult, he can use me as an example to never give up, no matter how hard life can get.