An Alnwick mum, whose daughter suffers from a rare disease, is starting a year-long fitness challenge to raise money for research into the condition.
Samantha Kelly says she is ready to be pushed out of her comfort zone in a determined effort to collect vital funds for the PTEN Research Foundation.
The mother-of-three is inspired by her 13-year-old daughter Charlotte, who has Cowden syndrome – a rare disorder affecting about one in every 200,000 individuals.
A sub-division of PTEN hamartoma tumour syndrome (PHTS), it is characterised by multiple noncancerous, tumour-like growths called hamartomas and is associated with an increased risk of developing several types of cancer.
Currently, there is no treatment for PHTS and awareness of the condition is relatively low. The PTEN Research Foundation aims to accelerate research that could lead to a therapy for PHTS.
And in a bid to help, Samantha, 44, is starting her exercise challenge on Sunday, where she is planning to do a minimum of five CrossFit sessions each week for 12 months at Alnwick’s Real Fitness. Gym instructor Hesus Kidd will oversee her training.
Samantha will pay a £5 penalty each time she fails to do a work out and will also donate to the cause each time she achieves a personal best or learns a new skill.
She said: “I want to push myself out of my comfort zone, because someone with a rare disease lives out of their comfort zone 24/7.
“The challenge will be 260 CrossFit sessions over the course of the year, which corresponds with the estimated 260 Cowden syndrome patients in the UK. Rare diseases are massively underfunded and misunderstood, so I hope people will support me and help me bring a little hope.”
Life has certainly been tough on the Kelly family. In 2014, after years of poor health, Charlotte had tonsils and adenoids removed. They were the largest the consultant had ever seen.
In March 2016, Charlotte’s thyroid – which had two tumours growing on it – was removed, and in the May she had radioactive iodine treatment.
A few months later, aged 12, she was diagnosed with Cowden syndrome. She also has chronic fatigue syndrome and postural orthostatic tachycardia syndrome, which causes dizziness, fainting and other symptoms. She is currently home-schooled.
Samantha said: “Her life has changed completely and it is heartbreaking, although Charlotte is a positive person.
“I felt numb when she was diagnosed with Cowden and told that she would be at a huge risk of cancer for the rest of her life.
“She has regular checks and hospital appointments to look for any signs of cancer, but we as a family live in fear. This is the reality of living with Cowden syndrome.”
To support the fund-raiser, sponsor Samantha by visiting mydonate.bt.com/fundraisers/xfit4cowden
Alternatively, Samantha is encouraging people to challenge themselves to raise money for the cause. It doesn’t have to be CrossFit, it could be running, swimming or whatever you enjoy. Set a penalty amount for each session you miss or make a donation when you reach a goal.