Child in a Million - Wednesday March 7

child in a million(3/6) 20.00–21.00

This series of observational documentaries explores a variety of complex medical conditions and treatments at London’s Great Ormond Street Hospital. Cameras follow 13 children and their families as doctors diagnose and treat their conditions using cutting-edge techniques. In this programme, we meet seven-year-old Kyle, who has an extremely rare immunodeficiency disease, and 17-year-old Leanne, who suffers from pulmonary hypertension.

Young Kyle’s condition, CD40 ligand deficiency, is found in only one in a million male births. It makes him highly susceptible to infection, and his lungs and liver have already been damaged. But Great Ormond Street now offers the hope of a cure, in theform of a bone-marrow transplant. A matching volunteer donor has been found and hopes are high, but there is no getting away from the fact that this will be a risky procedure. “We’ve given him a 50% chance of success, which is not good,” admits consultant Paul Veys.

Before the transplant, Kyle must undergo chemotherapy to prepare his body. A new therapy using two relatively gentle drugs will mean chemo can be kept to a minimum, but Kyle’s immune defences will be weakened to prevent the rejection of the new cells. This means he will be extra vulnerable to potentially life-threatening infections. “Even though you know it needs to be done, you can’t say you’re ever ready for it,” says distraught mum Gloria as she sees Kyle in pain and throwing up.

After 24 hours, Kyle is moved to a specialist isolation ward where he and his mother will live for a month, keeping a video diary to chart their feelings and experiences. Gloria says that she and her husband are always very honest with Kyle about what his treatment will entail. “We couldn’t put him through all this without him knowing what was involved,” she insists.

Finally, it’s the big day when the bone marrow is introduced into Kyle’s blood via a drip. “It’s a very big fight for me,” Kyle realises. He is right, since this stage of the treatment brings new risks: the donor cells could fight Kyle’s own cells and attack his weak liver and lungs It will be two weeks before tests reveal whether the new cells have taken. Meanwhile, there is the constant risk of infections, so Kyle is confined to the isolation ward.

Despite the family’s optimism, the results of the lab tests are disappointing. “We are not seeing any donor cells at the moment,” admits Paul Veys. It’s left to a tearful Gloria to tell Kyle that they are back to square one. She is wary of giving the gruelling procedure another go, so all that remains at the moment is for her and her husband to help their spirited son live life to the full.

Tonight’s programme also follows 17-year-old Leanne, who suffers from pulmonary hypertension. This rare condition affects her lungs and puts pressure on her heart. Left untreated, it would probably have killed her within three years. Now, she is fighting a daily battle to stay alive.

Up until the age of 13, Leanne was the picture of health. “I was such an active, super-fit person,” she says. “To wake up one morning not being able to breathe or climb the stairs… Wow, it was a shock.”

There is no cure for Leanne’s condition, although a range of treatments help her manage it. She may need a lung transplant in the future, but this is a high-risk operation. For now, she follows a strict regime of tablets. In addition, the medication needed to open up the blood vessels in her lungs must be administered to her system directly throughout the day. A small pump pushes the medication through a tube that enters Leanne’s body via a needle stuck into her stomach tissue. Every ten days, Leanne must reposition the needle to keep the drug diffused throughout her body –a painful procedure.

But administering drugs this way seems to be getting less effective for Leanne, and her health is declining. Luckily, another visit to Great Ormond Street throws up a whole new procedure that promises to improve the quality of Leanne’s life…

About the author

  • Sylvia

    I wish for all of us, healthy and sick, to have the same positive disposition and maturity as Kyle’s, and to be able to view our unfortunate incidents, small or big, through Kyle’s beautiful eyes just to see in fact how beautiful each negative and positive experience is.
    I bless our (humanity) light.
    I am sure we’ll be one.
    Thank you, Kyle.
    Bless your beautiful light.

  • Sabine Bouma

    Is there any update about Kyle, is he still alive today?

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