Little Charlie's agonising wait for his life-saving transplant

FOR the parents of six-year-old Charlie Pearson, the wait is agonising.

Their young son has a rare form of leukaemia and they urgently need to find a bone marrow donor to save his life.

His condition only surfaces twice a year in the UK, and means he has to visit Edinburgh's Sick Kids Hospital twice a day from his home in Tranent, East Lothian. If his condition deteriorates further, a transplant may not be possible.

Each day, his parents, Pam and John, hope for the call from the bone marrow donors' register to tell them a match has been found.

The phone call has yet to come though.

"He's just like any other little boy, he loves Harry Potter, he loves playing, he's a happy kid," said Mrs Pearson, 35, a nurse at the Western General.

"He knows there's something wrong with him, but he's too young to understand exactly what."

Charlie was diagnosed with juvenile acute myeloyd leukaemia in September, news that came as a shattering blow to Mrs Pearson and her 43-year-old husband, a chef.

Charlie already suffered from bone marrow dysplasia, which can either vanish or mutate into leukaemia, and even though they were aware of the possibility, Pamela said: "We were totally devastated.

"Myself, my husband John and even Charlie's three-year-old brother Louis got tested to see if we could donate, but we knew there would only be a one-in-four chance of it being a match, and unfortunately none of us were."

Just this week Charlie began an alternative form of chemotherapy which involves an injection into the ankle; because his leukaemia is so rare that little is known of how exactly to treat it.

Charlie is in good spirits, but it's essential he receives the transplant now.

Mrs Pearson said: "He really needs to get it while he is well because it won't be able to happen if his condition deteriorates.

"The Anthony Nolan Trust are looking around the UK for a donor, and if they can't find one the search goes worldwide.

"It's a slow process and we are just so hopeful someone can be found in time."

Mrs Pearson is desperate for more people to come forward and donate bone marrow. "It's like so many things, you read about or hear about a child who is ill and you think it is terrible," she said.

"I used to think it too, but you've no idea what it is like until it is on your doorstep.

"I would encourage everyone to look into this. They might not be able to help Charlie, but there will be someone who benefits.

"People may think it is a lot to go through, but it is nothing compared to what that person is experiencing."

Angela MacVicar, Anthony Nolan Trust's donor recruitment manager,

said: "Joining the register could be one of the most important and rewarding steps that a person could take.

"Potentially, they could be the only person in the world who is a match for a patient with a life-threatening illness."

SIGNING UP COULD MAKE ALL THE DIFFERENCE

ALTHOUGH the Anthony Nolan Trust has been able to save the lives of 6000 people requiring a bone marrow transplant, 16,000 are still waiting to find the right donor across the globe.

As a result the charity is desperate for people to come forward and sign up.

There is no guarantee, once enlisted, the would-be donor would ever be called upon, and the process is far less rigorous than it used to be. Your marrow type could be the only one on the register, and the type a person has been waiting for.

It is easy to sign up, all that is involved is a small blood sample is taken and a medical history questionnaire filled out.

From this point on you could be called upon at any time for the full donation, where you will again be asked if you are sure this is what you want to do.

As the charity points out, the majority of people on the register will never actually make a donation.

Anyone in good health between the age of 18 and 40 can sign up, although males are more urgently needed than females.

If a match is found there are two methods of donation. The traditional bone marrow harvest involves a two-night hospital stay and the cells are extracted under general anaesthetic.

There are two opportunities coming up in the city to sign up to the register. Mobile clinics will be set up at the Mercure Point Hotel on Bread Street on December 10 from 3pm-7pm, and at the Western General the following day between 6pm and 9pm.

It is also possible to submit an application online, at which point a sample kit will be sent to you which your local GP can administer.

For more information visit www.anthonynolan.org.uk/donating