Running in honour of Harry and Lily

A woman whose brother died aged 16 and whose 14-year-old sister has a brain tumour is putting on her running shoes to raise money to research the genetic condition that’s thought to have affected them.

Harry Sandell suddenly died last October while sister Lily Sandell has an inoperable brain tumour medics have said is due to Neurofibromatosis, also known as NF1.

Their mum Jannine Sandell also has the condition that affects the nervous system, though her symptoms are currently milder.

Having seen the effect the condition is having on the Moulton family’s lives, Jannine’s step-daughter Kayleigh Jones is taking part in a series of runs to raise money for the likes of the Childhood Tumour Trust a charity for families affected by NF1.

She’ll do so with a picture of University Academy Holbeach pupil Harry on her running vest.

It was on October 14 last year he suffered a perforated bowel which doctors have now said was weaker than a usual person would have because of the NF1.

Though he had mobility issues, dyspraxia and scoliosis as a result of his condition, his death came as a huge shock to the family.

“Harry was such a lovely person,” mother of two Kayleigh said. “He was such a caring child and he had a really good relationship with my son Theodore (6).

“They both love football and played in the garden for hours together every weekend.

“Theo’s still wondering where he is when it comes to playing football.

“Harry was a very keen supporter of both Arsenal and Peterborough United.

“He was really bright too and was studying business in sixth form.”

Harry’s passing came while Jannine was in hospital with Lily who was suffering from headaches.

She was diagnosed with a brain tumour aged eight suffered an aneurysm in 2015 and a stroke in 2017 which led to her losing the majority of her mobility down her left-hand side.

“Lily’s just a brilliant person,” Kayleigh, who lives in Holbeach, continued. “She’s incredibly funny and witty.

“They’re all inspirational.

“I’ve previously raised around £350 for the Brain Tumour Charity having run 88k throughout February and now I want to do something in Harry’s memory.

“That’s why I’m going to run the Rutland Half Marathon in September in loving memory of my brother, sister, my step-mother. and anyone else who suffers from Neurofibromatosis.

Any donation would be greatly appreciated and would help the Childhood Tumour Trust with their much needed research and facilities.”

To donate visit search for ‘Kayleigh Raise Money for the CTT’ on the Go Fund Me website.