Benjamin’s NF1 story
10 September 2025
Benjamin is our 11 year old son, and the inspiration for our fundraising.
He has faced many challenges with his physical development and learning since he was a baby and was eventually diagnosed with NF1 three years ago.
Since then, we have found the advice and support provided by Nerve Tumours UK absolutely invaluable, as we have embarked on our journey navigating the complexities and unpredictability of the condition.
We are fortunate that Benjamin receives regular monitoring from specialists at Alder Hey Children's Hospital and his wonderful consultant paediatrician at our local hospital. He has a number of cafe au lait patches over his body and recent check-ups have revealed a slight curve developing in his spine that will now also be monitored by the orthopaedic team, but his health is otherwise stable at the moment.
Benjamin also has special educational needs that are attributed to the NF1. He particularly struggles to process, understand and retain information, to maintain concentration, and has problems with social communication. He finds motor skills, balance and coordination a huge challenge and has some sensory processing difficulties too.
We don't know yet how the condition will affect Benjamin as he grows up but as a family, we are determined to show that with a little commitment and determination, we can achieve anything!
– Natalie"Having Nerve Tumours UK helps make everything a little less daunting and its hugely important to us to be able to give something back, whilst also continuing to raise awareness of Benjamin's NF1 amongst our family and friends."
We therefore decided to do two fundraising activities this year. Firstly, Matt (Benjamin's dad) ran the Manchester Marathon on 27th April.
He completed the course in 4 hours 25 mins - a great achievement in uncomfortably warm conditions.
Benjamin and his little sister Martha then ran the Junior and Mini Great Manchester Run on 17th May, which was a fantastic way to recognise World NF1 Awareness Day.
It was a super event and they both had such a lot of fun and ran their races with huge smiles on their faces.
Benjamin was extremely chuffed to finish a whole 4 minutes faster than his mum Natalie!
Nerve Tumours UK are extremely grateful to Benjamin, Martha, Matt and Natalie for their efforts in raising awareness and fundraising, and for sharing their story.
If someone in your family has been recently diagnosed with NF, we are here to help.
Contact our Specialist NF Nurses via the Helpline for advice.
The Helpline is available on Monday, Wednesday and Friday 9am-5pm
Call 07939 046 030/ or Freephone 0300 102 17 22
Email helpline@nervetumours.org.uk
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