A SPORTY girl with a rare form of bone canceer is being supported by the community which is staging a pilates fundraising event in Okehampton to help her.
Nevah Richards, 13, has Ewings Sarcoma and her family are in need of fiancial help to boost their additional daily expenses to meet her needs.
On Saturday, November 25, from 9am—12noon the pilates event is at the sports hall, Parklands Leisure Centre in Simmons Park with cakes and drinks and draw prizes and children’s disco in the dance studio.
Donations are suggested for the pilates. No booking and only cash payments will be taken, said organiser Lynne Rogers.
Sporting Nevah, a keen runner and hockey and cricket player, was diagnosed with Metastatic Ewing Sarcoma in May this year and her life and that of her family have been thrown into turmoil
She has a type of bone cancer, originating from her pelvis and surrounding soft tissue which has travelled to her lungs. Fewer than 30 children are diagnosed in the UK per year. As case studies are so low, resources are limited to understand the exact cause of primary bone cancer and curative treatment plans. So, expertise is limited.
The family were thrown into cycles of intense chemotherapy to stabilise Nevah’s condition. Now they are at University College London Hospital for her specialist proton beam therapy, which is an advanced targeted form of radiotherapy in place of risky surgery to remove the tumour.
Nevah’s mother Heather said: “The diagnosis has thrust us into a cyclone of physical, emotional and financial despair. Nevah’s condition is one in a million, which is why we thought it would never happen to us.
“We are a close family and we will dig deep to support one another emotionally, but it is a time like this that you don’t have the energy to deal with the financial strains of cancer. Which is why we are delighted when Lynne approached us about a fantastic fundraising idea to support us directly. Okehampton will always be close to our hearts for all the fond and cherished memories and lasting friendships.”
Heather added: “Although, it feels very isolating right now, we take great strength in all the messages, gifts and donations sent to us, Nevah, and to her gofundme page which has raised £7,000 for The Christie Charity towards Ewing Sarcoma Research. Cancer has ripple effects and we know all too well that it evokes strong emotions for all.”
Heather said: “Nevah is my legend. She may be timid in public, but she’s a bubbly girl and has amazed me how she’s going through the cycles of chemotherapy every two weeks when she can only endure it, then recover before it starts again.
“She badly misses her friends at school. But is so resilient. She is in high spirits and has an air of optimism which is an example to us all. She’s mature for her age in that she looks only to the next milestone of treatment and that’s how she copes.”
The beam therapy is less invasive than surgery. The tumour is inoperable, so the beam therapy, which is new to the UK (since 2018) is only offered at Birmingham and London as an advanced form of radiotherapy using protons rather than X-rays. It hits the tumour with minimal damage to the surrounding tissue and organs. Surgery would be too damaging to the area round the tumour.
Nevah lost her blonde hair after the first cycle of chemotherapy. The has had ten cycles so far. This will continue at a specialist unit in Southampton Hospital after Christmas.
The family are facing large costs as they spend two months in London which the fund raising is to help alleviate.
Nevah has an Instagram account, initally to share her treatment experiences with her family. But now she is going public: “She takes so much pleasure from positive words of strength and wants everyoe to know what cancer treatment is like as a teenager,” said her mother.
The family have been a prominent family in Okehampton for 18 years. Nevah and her sister Marla, 15, were brought up there, until a year ago when they all moved to Dorchester to be closer to relatives. Both girls attended baby and toddler groups before Okehampton Primary school and Okehampton College.
Heather gave up a job at Okehampton College in the SEND department, forging connections with students and families. Sport and exercise was always going to be a big feature of the girls upbringing, as she and husband Adam were actively involved in local sports clubs.
He coached club tennis for years voluntarily and organised club tournaments and tennis camps.
Heather ran with Okehampton Running Club and supported a junior running club to which Marla and Nevah belonged.