Lily-Rose Lenton's fundraising page
08 September 2024
Run
I am taking part in the Great North Run to help raise money for the charity that has helped my family out all of my sisters life
The reason I’m taking part in the Great North Run is partially a letter of love to my sister, who has had to cope with the daily challenges that NF1 brings her way, and to the charity that has supported us as a family throughout the years.
For those who don’t know, NF is the group name for Neurofibromatosis Type 1 (NF1), NF2-related-Schwannomatosis (NF2) and Schwannomatosis (SWN). All of the conditions cause nerve tumours, and all involve health complications.
These tumours are usually non-cancerous (benign). They can be internal, or external, they can be big or small. Sometimes they cause no harm, other times they can provoke complications. NF is indiscriminate; it affects all races, age and genders equally.
In my sister’s case, she has Café-Au-Lait patches, freckling, neurofibromas & an optic glioma. In 2012 she had surgery to remove a benign brain tumour. Then to throw on top of all of this, she has some learning difficulties which includes processing information.
Nerve Tumours UK, as a charity, has been an amazing asset and support network for my family going up.
We got provided the contact of a local specialist advisor, who would help my sister’s schools understand what support she may need, and be there to answer any questions or concerns. They also arranged days where we could meet with other families and spend time together as people with the condition and people who had siblings with the condition and not worry about day to day struggles and be kids. (Oh and I suppose it gave the parents a break too… 😉 )
Even though I won’t be running but walking, I’m aiming to beat my pb from 2018 of 4hrs 44mins
Roisin Currie
10/09/2024
Great cause - well done!
£30.00
Dawn
09/09/2024
Well done, Lily-Rose.
£5.00
09/09/2024
No message provided
£10.00
08/09/2024
No message provided
£30.00
Mum
08/09/2024
Well done over half way round the race. Keep going, remember every step forward is a step nearer the finish.
£20.00
Aunty Annie
06/09/2024
Birthday
£20.00
Aunty Margaret
06/09/2024
Birthday
£10.00
Registered Charity Number: 1078790 and SC045051
Nerve Tumours UK has taken reasonable care to ensure that the information contained on this website and in its newsletters, literature is accurate. Nerve Tumours UK cannot accept liability for any errors or omissions, or for information becoming out-of-date. Any information given is not a substitute for getting appropriate medical advice from your own GP or other healthcare professional.
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