A mother has launched an appeal to find a stem cell donor for her son after doctors told the family he needs a transplant to save his life.
Twelve year old George Webb suffers from an extremely rare blood disorder called Diamond Blackfan Anaemia (DBA). The disorder, which affects only 125 people in the UK, is so rare that, until recently, George was the only person in the whole of Kent with the disorder.
George, who also suffers from Autistic spectrum disorder, was first diagnosed with the condition at just six weeks old, following a bone marrow biopsy. George was given blood transfusions until the age of six months every three weeks and since then his condition has been managed by steroid treatment. However his only hope of a long-term cure is a stem cell transplant, and doctors have warned he faces full bone marrow failure without one.
George’s mum, Vanessa Webb says, ‘I still remember clearly when the consultant called us in and he told us George had DBA. We just couldn’t take it because of the shock and there was so little information available because it’s so rare. Thankfully George responded well to treatment, and for so many years he’s been well and almost oblivious to his condition.’
George was doing so well that he even competed at National League Trampolining Competition Finals in Cambridge and successfully won a bronze medal.
However George’s condition started to take a turn for the worse as he was found to have skeletal abnormalities and severe immunity problems and adrenal insufficiency. A bone marrow biopsy in December 2013 revealed that his bone marrow levels were at 30-40% and a year later this decreased to 10-15%. After this shock news, the family was told that George risked full bone marrow failure if a lifesaving donor isn’t found by blood cancer charity Anthony Nolan.
Vanessa says, ‘When we got the news about his bone marrow levels it was such a rude awakening, we were devastated to say the least. If he carries on declining like this he could get very ill very quickly.’
‘As a parent, it’s horrible to have the wait for a match for your son hanging over your head. It’s been such a rollercoaster and it’s hard to sleep at night.’
Now the family are throwing their weight behind a campaign to find a match for George and others like him, by encouraging young people to join the Anthony Nolan register. The charity is currently searching its register for a suitable match for George.
Vanessa has also been inspired by Kaisha Morris a mother of fellow DBA sufferer Joey Ziadi who has recruiter thousands of people to the register and went on to win awards for her drives for Joey.
The family have a long association with the charity Anthony Nolan as Vanessa’s father, Terence Painter, a former member of the Round Table in Broadstairs, was involved in the original appeal to find a match for young Anthony Nolan in the 1970s.
‘Every child needs the opportunity to live a full and happy life. For George, his future is the hands of selfless strangers on the Anthony Nolan register.’
‘We’re asking young people aged 16 to 30 to go onto the Anthony Nolan website and join the register, and everyone else can help just by spreading the word or supporting this lifesaving charity. You have the opportunity to give the gift of life to someone like George. We are relying on other people’s goodwill to save not just our son but everyone who cares for him.’
Will Guest, Regional Register Development Manager for Anthony Nolan, says, ‘George’s story shows how families rely on the remarkable people who join our register and pledge to save a life.
‘What many people don’t realise is how easy it is to join the bone marrow register – it simply involves filling in a form and providing a saliva sample. We urgently need more young men to sign up as they are the most likely to be chosen to donate but are under-represented on the register.’
If you are aged 16-30 you can join the Anthony Nolan register. George has also set himself 12 challenges to take on, with the help of his brother Samuel and other friends and family, to raise money for Anthony Nolan. The challenges kick off with a 26 mile Thanet Viking Trail cycle ride on 5th July 2015. To sponsor George click on the button below: