Final plea ahead of potentially fatal op

Emma Whittaker suffers from the rare condition Fanconi Anaemia which can cause bone marrow failure. PNL-140324-163424001

Emma Whittaker suffers from the rare condition Fanconi Anaemia which can cause bone marrow failure. PNL-140324-163424001

0
Have your say

A desperate mother is making a final plea for a bone marrow donor for her young daughter before she faces a potentially fatal operation.

Emma Whittaker, six, suffers from Fanconi Anaemia (FA), a blood disorder that can lead to bone marrow failure and cancer and affects just three in a million people in the UK.

Her mum Rachelle Emberton, 42, has been trying to find a match for her for more than two years.

Emma’s brother James, four, was diagnosed with the same condition but luckily a perfect match was found for him from the bone marrow register straight away.

Emma however is reliant on her father Malcolm Whittaker, 56, who has offered his bone marrow – but is only a 6/10 match.

She stands a 20 per cent chance of dying if the make-or-break transplant does not succeed.

Doctors first scheduled the op for October 2014 but as Emma’s health was relatively good it was postponed to next March (2015) in the hope of finding a better match.

Rachelle, who has given up her job as a social care trainer to look after her two children, said: “You only get one chance at this transplant. There are no other options after that.

“She has been a bit better in the past few months so doctors put off the operation. But now we can’t wait any longer, it’s been two very long years.

“I am absolutely terrified of what’s going to happen, I can’t even think about losing her. I gave up my job in July to spend a summer with my children.

“I kept saying to myself ‘it’s okay, it’s after Christmas’, but as the time goes by I realise it’s not far away at all.

“It takes six weeks for anyone coming forward now to go live on the register.

“That means anyone that comes forward in the next few weeks could potentially save Emma’s life just in time. We are hoping for a miracle.”

Rachelle, of Pitstone, discovered Emma had FA in November 2012 when she noticed she was bruising easily.

She was hoping James would be a match but just two months later when he was tested doctors broke the devastating news that he also had the debilitating condition.

Bone marrow makes blood cells, and as Emma’s fails she requires more blood transfusions.

Emma has now had five transfusions and is becoming more and more ill and doctors say she needs to be operated on imminently.

Rachelle added: “If I wasn’t a pushy mother then we would never have found out she had FA. We might never have known until she got really poorly.

“The condition is so rare I’ve had to explain it to doctors and give them the standards of care documents.

“I pull Emma out of school whenever I hear there is a bug going round because if she gets ill it could be very dangerous for her. It’s very rare so I have to be very careful.”

James, who also has one kidney, is due to have his transplant in spring 2016 but has not yet required any blood transfusions.

Rachelle and ex-musician Malcolm, who are both FA carriers, are urging people to join the Anthony Nolan bone marrow register.

It is dedicated to saving the lives of people with blood cancer who need a blood stem cell or bone marrow transplant.

There are fewer than 150 sufferers of FA in the UK - with an incident rate of just three in one million - and research and detailed information about the condition is patchy.

There are currently more than 500,000 people on the register, but the charity can still only find a match for around half the people who come to them in need of a lifesaving transplant.

Rachelle said: “Registering is really simple - people do not realise. All you have to do is spit in a pot and send it off and you are on the register.

“My mother is Iranian and the doctors think that there may be a match in the Iranian community.”

Eight-year-old Hollie Clark, from Cardiff, Wales, died in November of a rare bone marrow disorder called Myelodysplastic Syndrome.

Her Twitter appeal for a match saw celebrities including Gareth Bale, Russell Howard and Gethin Jones joining in with “pants on head” selfies.

Hollie found a match and passed on the appeal onto Emma, but unfortunately Hollie died two months after the transplant following complications.

A band called The Portraits has also released a single called The Rest of Time which they’ve dedicated to Emma to raise money for charity Delete Blood Cancer.