'SAVIOUR SIBLING'
Bone marrow transplant from sister to take place in London hospital
by STACEY HEANEY
A
LOCAL family are preparing to travel to London on what they hope be the
final step on a long, and at times seemingly impossible, journey to find a
cure for their seven-year-old son who suffers from the rare blood disorder
Diamond Blackfan Anaemia.
Josh Fletcher from Moira will go to St Mary's Hospital in February to receive a bone marrow transplant from his four-year-old sister Jodie in the hope that it will allow him to make a full recovery.
Josh's parents Joe and Julie made history when they fought a lengthy battle to be allowed to have a so called 'Saviour Sibling' so that stem cells from Jodie's placenta as well as her bone marrow could be used to help their sick son.
The family face six months living in London, meaning separation from Josh's siblings Adam, 10, and Jodie, 4, during that time. However, the family are hopeful this will be the final step in the long process which has seen Josh receive blood transfusions since he was six weeks old.
At present his life expectancy is just into his thirties. However, should his treatment be successful he can expect to live a full, normal life.
Diamond Blackfan Anaemia means that Josh's bone marrow doesn't produce any red blood cells. Therefore, the Meadow Bridge Primary pupil requires a blood transfusion every two weeks. He is also on a continuous infusion of a drug to combat the high levels of iron in his body as a result of the blood transfusions, meaning he is also at risk of leukaemia and bone cancers, whilst the excess iron can cause organ failures in later life.
His parents have already gone to extraordinary lengths in order to treat Josh, becoming the first couple to give birth to a 'saviour sibling', their much loved daughter Jodie, in 2005.
It is Jodie's birth that has enabled this procedure to take place, with stem cells from her placenta being used, as well as the four-year-old donating her bone marrow.
Joe and Julie are now trying to find somewhere to live in London whilst they stay with their son, who will be in isolation for six to eight weeks and will need to remain in hospital for up to a month after that, as well as needing to return to hospital each day for a few months afterwards.
In order to help with the expense the family will face, with Joe having already requested a nine month unpaid leave of absence from his job with the Fire Service, members of the Lisburn Taekwondo Club recently held a sponsored Kickathon, which helped to raise £3,705. Speaking about the procedure Joe explained: "Josh is most likely to be in London for six months. He will be in isolation for the first six to eight weeks as the new bone marrow kills off his own bone marrow. There is the possibility he can pick up different infections and the biggest worry is Graft-versus-host disease (GVHD), where functional immune cells in the transplanted marrow recognise the recipient as 'foreign and mount an immunologic attack.
"He needs to stay within easy distance of the hospital for the first few weeks getting out and he is not allowed on public transport, even after he comes home there will still be a slight risk."
Josh will have to undergo chemotherapy to kill off his own bone marrow in preparation for the transplant, whilst Jodie will provide bone marrow in addition to the stem cells collected at her birth.
Joe said: "We had hoped Jodie would not have to have the bone marrow transplant but the placenta had a pure quantity, although it will not be a full donation from Jodie, it will just be enough to make up the quantity they need."
With Joe and Julie having to be in London with Josh whilst he is in isolation, and at least one parent needing to be with him at all times, Adam and Jodie will be cared for at home by one of the pair with their grandparents helping out.
Joe said: "The hard bit will be being without the kids here for 12 weeks but we will bring them over to see us and Josh at the hospital. Josh will not be able to bring his own toys with him so the hospital will give him toys and he will be allowed the bring in a laptop with a webcam to talk to the family.
"This will be the end of the worry," Joe stated. "Josh has had to have a blood transfusion every two weeks and he requires an iron drug every day, given intravenously every day, which he carries around in a Nintendo bag. He can't go swimming or play sports, now he will be able to live a totally normal life and have a totally normal lifespan. "He will still have a higher risk of other cancers but otherwise he will live a totally normal life with no hospital visits and no needles."
Josh's treatment is provisionally scheduled for February 1, and Joe is hoping everything will go as planned.
"It has been five years getting to this point," he said, "It is coming to the crunch now."
Dr Josu De La Fuente, who will be carrying out Josh's procedure, is the British Diamond Blackfan specialist, which encouraged the family to choose St. Mary's in London rather than go to Bristol where most transplants are carried out.
Joe said he was delighted with the funds raised by the members of Lisburn Taekwondo Club, led by Peter Stewart, who works with Joe.
"I was delighted when Peter told me what he was doing" Joe said. "This will be a really good help and will go a long way to us living there.
"People have been so unbelievably generous, we have been humbled by how much they care. The parents at Meadow Bridge Primary have also been very good and have offered to assist in school runs whilst we're away, which is a weight off our shoulders. It is Adam we are worried about, he is very smart for his age and we are worried how he will deal with the separation but people have offered to take him to football and swimming." As to how Josh will cope with everything, Joe said: "Josh takes his treatment really well. I think he is looking forward to six months off school, although he will have tutors there. But he knows that the sooner he gets his treatment, the sooner he won't have to have anymore needles; so he is keen to get it done."
stacey.heaney@ulsterstar.co.uk
Ulster Star
13/11/2009
