A LITTLE boy faces his third bone marrow transplant before his second birthday.
Jack Kleinberg has battled against two life-threatening conditions as he suffers from familial mediterranean fever and Wiskott–Aldrich syndrome, which affects one in 10 million children and means he has to live in virtual isolation.
His parents, Rob and Vicki, live with the knowledge that any part of his body can stop working at any time from a simple fall or infection.
The couple, of St James Gardens, Westcliff, spend much of their time travelling to Great Ormond Street Hospital for Jack to receive treatment to keep him alive.
The family includes Rob’s children from a previous relationship, Oliver, 14 and Sophia, ten.
Vicki, 28, said: “It’s a 24/7 job, but we wouldn’t change it for the world. Oliver and Sophia didn’t see Jack for the first year because he was in hospital. Its become normal for them to come home and wash and change into sterile clothes before they can see Jack, because of the danger of infection for him.” Jack has had one full transplant and a top-up transplant and is waiting for a potential donor for a possible third transplant.
Vicki said: “People think it is a painful process, but these days it is a stem cell transplant where if a donor is found to be suitable, they are given an injection the week before, which makes the body release bone marrowcells into the blood stream which are then taken like a normal blood donation. It takes just 20 minutes of someone’s time and saves so many lives. The transplants have given Jack 25 per cent of the cells he needs. Without them, he wouldn’t have lived past his first birthday.
“We are trying to get through Christmas and then we will decide on whether, if a donor is found, Jack has another full stem cell transplant or whether we let him live his life, with all its restrictions, for a while because he has spent so much time in hospital.’’
For more information about becoming a donor, visit www.anthonynolan.org
Rugby club is pitching in
JACK’S battle has so moved Southend Rugby Club members, they have organised a fundraising match.
Jack’s Journeymen v Harp Seasiders takes place at the club in Warners Bridge Park, Sumpters Way, on January 3 at 2pm.
Member Ally Gavin has organised the event for fellow club member and friend Rob.
Ally said: “Hopefully, the match will be the first of a series of fundraisers. What Jack’s been through is unbelievable.
We want to raise awareness of how important it is to give blood and get tested to see if you could donate bone marrow.
“The moneywe raise will go to Great Ormond Street, the Anthony Nolan Trust and Neptune ward at Southend Hospital.’’ The event will also help raise funds for Southend homeless charity HARP.
Players pay £25 and get a Jack’s Journeyman hoodie.
Spectators can watch for free, but donations will be welcomed.
Four-piece band Under the Hat will entertain and there will be an auction of rugby memorabilia, a raffle, beer on tap, food and activities for kiddies.
Jack's two conditions
WISKOTT–ALDRICH syndrome is a genetic condition affecting the immune system.
Patients suffer bacterial infections of the sinuses and lungs, eczema that resembles an atopic dermatitis and a tendency to bleed.
The condition can be lethal and sufferers can develop malignancies. Sufferers often require platelet transfusion to stem episodes of bleeding.
Stem cell transplants can offer the chance of a cure. If stem cell transplantation is not carried out, individuals usually survive until their second or third decade.
Familial Mediterranean fever is a hereditary condition, more common in people of Mediterranean descent, and causes short, recurrent episodes of peritonitis, pleuritis, arthritis and fever.
The condition may lead to renal failure, hypertension and renal vein thrombosis, infertility and miscarriage.
Strict adherence to a drug regime is needed to keep the condition in check.
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