Mother hails approval of breakthrough childhood cancer drug which could have helped her tragic son
PUBLISHED: 10:34 12 July 2018 | UPDATED: 10:51 12 July 2018
© ARCHANT NORFOLK 2012
The approval of a breakthrough cancer drug to be available on the NHS is bittersweet for a North Walsham mother whose 22-month-old son died from the disease five years ago.
Little Ryan Wright, from North Walsham, was diagnosed with neuroblastoma in its most aggressive, stage four, phase in February 2012.
His plight and plucky fight touched the hearts of the closeknit north Norfolk community who turned out to raise money and give support to his family.
But tragically, even though at one point Ryan’s condition seemed to improve, he died on May 17, 2013.
Now, a drug which could have boosted Ryan’s chances of survival has been made available on the NHS, after the National Institute for Health and Care Excellence (NICE) previously refused to back the £150,000 treatment due to “substantial uncertainty” about its long-term benefits.
Hayley Wright, Ryan’s mother, said she hoped the move would help other families.
The 37-year-old mother of three, who still lives in North Walsham, said: “It’s absolutely great, it’s been a long time coming and it’s a shame it was not available for Ryan but it’s going to save other families going through the devastating things we’ve been through.
“I’m sad it didn’t happen sooner because we could have tried to get Ryan on it, but if it’s going to help other children survive it, I’m just glad it’s come out now.”
Mrs Wright, who launched a charity shop in Ryan’s memory to help other families coping with childhood cancer, said neuroblastoma had a “devastating” impact.
She said because of the constant hospital trips, it was impossible to work, and their lives had been put on hold.
“Ryan had it for 18 months and a year of that was spent in and out of hospital,” she said.
The approval of the drug could give hope to a Mattishall family, whose three-year-old is suffering with the same disease.
Denver Clinton, who is described as “happy and cheeky” was diagnosed with stage four high-risk neuroblastoma in May.
His mother, Wanda Clinton, said: “There are no words to describe the utter devastation we all feel, my world has been turned upside down. It’s a nightmare watching Denver in great pain and discomfort. Seeing him change from my happy, cheeky little fella to a boy with cancer almost overnight is the most heart-breaking thing to possibly endure. “
Already the tot has been through six high doses of chemotherapy, bone marrow aspirations and blood transfusions.
But it is not known whether the newly approved drug, dinutuximab beta, would be effective.
Denver’s family are fundraising for his treatment and donations can be made here.
NICE guidelines said it will be given to patients aged 12 months or over whose disease has at least partially responded to first stage chemotherapy, followed by myeloablative therapy and stem cell transplant but only if they have not received anti-GD2 immunotherapy.
Neuroblastoma is a cancer that develops from specialised nerve cells called neuroblasts, which are left behind after a baby’s development. It is most common in children under the age of five, and is estimated to affect 100 children each year in the UK.
Treatments for high-risk neuroblastoma include chemotherapy, radiotherapy, stem cell transplant, surgery and isotretinoin.
The main aim of current treatment is to extend survival, but experts have called for a cure.
Dinutuximab beta temporarily helped tragic football mascot Bradley Lowry, from County Durham, whose cheeky smile captured the nation’s hearts before his death in July last year.
Bradley’s mother, Gemma, campaigned for dinutuximab beta to be more widely-offered after she said it helped temporarily clear her six-year-old son’s cancer.
Mrs Lowery said: “This is a huge step forward in the world of neuroblastoma and takes away so much stress for the families whose children are fighting against it.
“I know first-hand how this drug is a huge benefit to children who have neuroblastoma.
“Bradley became cancer-free after having dinutuximab beta as part of his frontline treatment.
“Making it available on the NHS for children with high-risk neuroblastoma will be a huge relief for parents and will give them hope.”