Nicks Triathlon in Support of his daughter Eilidh
22 October 2019
Nicks Triathlon in Support of his daughter Eilidh
Nick Frost is testing his body to the limit by taking on the "Outlaw" Iron Distance triathlon in support of his daughter Eilidh who has NF1. Here he tells us about Eilidh’s story and his reasons for taking on such a formidable challenge.
Eilidh has just celebrated her 10th birthday last weekend and is an amazingly beautiful, caring and happy child.
Around 5-6 years ago during a visit to the doctors, for an unrelated check-up, the doctor recognised some marks on her body which turned out to be café au latte marks. We call them Giraffe Spots as Eilidh is mad on Giraffes!
Quite quickly after this appointment we visited the genetic clinic at Aberdeen Royal Infirmary who have been amazing, followed by several visits to other departments. Eilidh was diagnosed with NF1 and both me and Carol were checked and cleared of the genetic condition.
The appointments have continued yearly ever since and thankfully apart from some mild behavioural issues, which could be classed as children being children, no other symptoms have been found and Eilidh leads a very happy life.
We do worry and as she is approaching a critical age in her life we often over analyse daily behavioural changes and each year we have to discuss with teachers some of her less productive features of Eilidh's behaviour such as lack of attention and focus and forgetfulness to ensure they understand the common behavioural differences often exhibited by children with NF.
– Nick"Apart from some mild behavioural issues, which could be classed as children being children, no other symptoms have been found and Eilidh leads a very happy life. "
This is where the Nerve Tumours UK website has helped immensely. The help sheets and information have time and again proven invaluable for us as parents and our families and other important people such as the teachers in Eilidh's life.
Therefore, to give something back I decided I wanted to raise some money for the charity and set about finding myself a challenge.
We recently had a holiday in France, near Nice, and on arriving back in Nice to fly home I noticed the Nice Ironman was the following day. As an already keen cyclist but someone who has never swam distances nor a comfortable runner, the idea of an Ironman scared me, yet the prospect excited me. This would indeed be a worthy and serious challenge for me at 45!
Before committing to the challenge, I joined a local triathlon club with coached swimming lessons to see if I was capable of distance swimming and after a few sessions decided this is something I can work towards. I have since booked my place on the 'Outlaw' Iron distance triathlon which will take place on the 26th July 2020 in Nottingham.
The swim is 3200m followed by a 180km bike ride followed by a full marathon, each of which scares me stiff never mind completing all three one after each other! I have started training which is going well although my poor knees are screaming for me to stop, having just opened a Just Giving account I am now committed to the challenge.
Everyone at Nerve Tumours UK would like wish Nick the best of luck in his triathlon and thank him for his all his efforts in fundraising for our shared vital cause!
– Nick"This is where the Nerve Tumours UK website has helped immensely. The help sheets and information have time and again proven invaluable for us as parents and our families and other important people such as the teachers in Eilidh's life. "
Filter News

Meet Helen
Helen is the Specialist NF Advisor for Devon and Cornwall and is based at Derriford Hospital in Plymouth.
Read More
Meet Rebecca
Specialist NF Nurse Rebecca is Lead Nurse, NTUK and is based at the Genetics Institute at the Centre for Life in Newcastle
Read More
World Mental Health Day 2023
NTUK (as part of the Neurological Alliance) has signed a joint letter aimed at improving access to mental health services
Read More
CAR Research visible difference experiences during recruitment
Research participants required, find out more and take part
Read More_800_600_s_c1.png)
Oliver Bromley’s NF Story
Oliver Bromley, with NF1, was asked to leave a restaurant due to his appearance, sparking a call for greater awareness and ed
Read More
NF Academy 2023 - Ella’s Blog
Ella, who has NF1, attended the week-long 2023 NF Academy in Portugal, meeting young adults with NF from all over Europe
Read More
University of Manchester Research
Read about the latest PHD research, involving Nerve Tumours UK, at the University of Manchester
Read More
New Research Study for Children and Young People with NF1
Find out more about the study and how you can participate here
Read More
Neurofibromatosis Type 2 name change
The new name for Neurofibromatosis Type 2 is NF2-related-Schwannomatosis (NF2)
Read More