To Infinity & Beyond!
01 July 2021
Roo, my nephew, was diagnosed with Neurofibromatosis Type 1 at the age of 17 months. This came as a shock to everyone. Researching the condition, although over 26,500 are living with the condition in the UK, not many people have heard of Neurofibromatosis and its impact. The first few weeks were a very scary time, with so many unanswered questions, until someone pointed us in the direction of Nerve Tumours UK. Being the UK’s leading charity on NF Type 1 and NF Type 2 they supplied us with all the information we needed. They were a great reassurance in such a dark and difficult time.
My nephew Roo continues to develop symptoms, one being early signs of speech and learning difficulties, as well as autism.
For a child of his age his speech is very limited, and he can only say a couple of different words but with the support of the NF community and Nerve Tumours UK, the future doesn’t look quite as scary.

Having found such a great support network, I did not hesitate to support Nerve Tumours UK with the aim to raise awareness of Neurofibromatosis. Between 14 & 20 June, I travelled the distance of 103 Miles! (the same mileage from Leicester to London). I decided to split the distance equally between 3 physical activities: Running, Cycling and Rowing, with the final mile being a walk with Roo himself. All of this was done at my local leisure centre.
Roo’s favourite thing in the whole world is Toy Story, however, more specifically Buzz Lightyear, resulting in his favourite word to say being ‘Buzz’. In honour of this, I did the whole challenge dressed as Buzz Lightyear!
All the donations raised are going straight back into the NF community and helping people just like my nephew Roo. I want people to know that being born with Neurofibromatosis doesn’t stop you from reaching your dreams, and just like Buzz Lightyear always says…"TO INFINITY AND BEYOND!"
Filter News
_800_600_s_c1.jpg)
Nerve Tumours UK Specialist Neurofibromatosis Nurses attend the 2020 NHS England NF2 Meeting
Find out what went on at the NF2 National Conference and how patient feedback has played a crucial role in improving services
Read More
Meeting Megan
Read about how Megan channels her NF1 challenges and uses it as a drive for positive change!
Read More
Nurse’s Conference 2020
Read about how our specialist nurses adapted to covid19 and supported our NF community
Read More
Children’s Tumor Foundation - NF Forum 2020 Moves Online!
Find out how you can take part in CTF's 2020 online NF Forum
Read More
Pauline & Helen Boughen’s PIP Journey
Learn how Helen & her mum Pauline overcame their difficulty with getting the benefits they deserved with Julie Ann Evans help
Read More
Pipers Rocks
Read about Pipers School amazing Rocktastic fundraising efforts for Nerve Tumours UK
Read More
Your NF questions answered directly from the Top!!
Get answers to your NF questions directly from our medical advisors
Read More