Battle is on to save brave St Albans boy’s life
FAMILY and friends of a brave St Albans boy fighting a rare cancer have been forced to launch a fundraising campaign to try and secure urgent medical care overseas after he was refused potentially life-saving treatment here.
Bailey Sarwa, the son of Becki Jones and Chris Sarwa, and a Year 8 pupil at Marlborough School, has recently suffered a relapse of neuroblastoma, a rare cancer that affects nerve cells, after nearly seven years in remission.
The 12 year old’s family and friends are making a determined attempt to save the “beautiful, gentle, kind and sensitive boy” by helping him receive further treatment in either Germany or the United States.
They have banded together to launch the Bailey Sarwa Appeal, organised by Families Against Neuroblastoma (FAN) through Bmycharity, to receive a vital antibody that is not available to him in the UK.
Bailey, currently undergoing chemotherapy at Great Ormond Street Hospital (GOSH), has been told that he will not be given the antibody as it is not available to those who have relapsed or have not responded to standard treatment.
Angered by the refusal, Becki questioned how the NHS could turn its back on her “kind, strong boy” while allowing taxpayers’ money to be used to fund, for example, a fresh start in life for some convicted criminals.
It is not the first time that Becki, a hairdresser and mum-of-two, has encountered problems with the health service.
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Bailey’s original symptoms of severe stomach pain at the age of four were originally dismissed as constipation.
He was examined by doctors eight times in as many weeks, who failed to notice the tumour, despite Bailey saying there were “blue worms” in his stomach – deposits of the cancer can appear as small blue lumps in the skin.
The final straw came when a doctor at Hemel Hempstead Hospital suggested the problems were imaginary. Fortunately a paediatrician at the hospital offered a second opinion, examined Bailey’s stomach and asked the first doctor why a grapefruit-sized tumour had been missed.
By that time Bailey had Stage Four cancer. Becki said: “Our lives came crashing down.”
After an operation at GOSH to remove the tumour, leaving him with a scar stretching the width of his stomach, Bailey underwent high dose chemotherapy and successfully fought the cancer despite the gruelling treatment.
Becki said: “Tragically, after being in remission for almost seven years, our beautiful gentle little boy relapsed. The cancer is back. We are devastated.
“He joined the St Albans Sea Cadets. He said he wanted to fight for our country. Bailey looked mighty fine in his uniform, we long to see him march again.”
She described herself as a proud mum who became an emotional wreck when told of the cancer’s return. Yet upon hearing the diagnosis Bailey reached for her hand and said, “Don’t cry mum, I’m going to win.”
Chris, who describes his son as his hero and best friend, has a tattoo of Bailey’s motto of, “I will know no fear”.
Becki said that Bailey’s best chance of a cure now was to receive the potentially life-saving antibody treatment. ‘Team Bailey’, which includes Chris, Bailey’s brother Morgan, stepdad Gavin Jones and stepmum Suze McCallum, has already raised over �5,000. They hope to raise up to �500,000 to send him overseas for the treatment.
Becki said: “We need to offer him a second chance to beat this.”
According to Macmillan Cancer Support, the antibody treatment is not yet a standard treatment for people with neuroblastoma, and is currently only available to patients in the UK who are being treated within a clinical trial.
Dr Penelope Brock, consultant paediatric oncologist at GOSH, said the rare form of childhood cancer could be very aggressive and difficult to treat.
She explained: “There is an urgent need for the clinical and research community to develop new treatments to improve outcomes in these very sick children and this is something we are working hard on with our colleagues across Europe.”
Dr Brock said she understood how distressing it was for families but as with all clinical trials, there was strict regulation and eligibility criteria around those who could take part. She did not comment specifically on Bailey’s treatment.
To help Bailey, go to www.bmycharity.com/BaileySarwaAppeal