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

The New National Helpline
The National Helpline is expanding to Monday, Wednesday and Friday, from early October
Read More
London Marathon 2022
Congratulations to our 2022 London Marathon runners - thank you from the NTUK team
Read More
Hannah’s NF1 story
9 year old Hannah is running the Junior Great North Run, so other children with NF can also have access to doctors & nurses
Read More
Sam’s Marathon
Sam, our Specialist NF Nurse for Merseyside & the North West, is running the London Marathon - her very first Marathon!
Read More
NF Patients Community Day
The NF Patients Community Day is on Sunday 9th October 2022 - register to attend virtually
Read More
Appearance, Identity & Law workshop
Appearance, identity & law workshop at Queen Mary University London School of Law
Read More
Alfred the Pirate
Seven year old Alfred the Pirate takes NF1 in his stride, and is supported by Specialist NF Nurse Mel
Read More
Nicole’s NF1 story & skydive
Nicole shares her NF1 journey and her motivation to inspire children with disabilities to achieve whatever they want to do
Read More