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Setback for little battler William Rhodes
THE parents of a little boy who hope to have another baby to save his life have suffered heartbreaking medical setbacks.
Three-year-old William Rhodes, of Holgate , has undergone 50 blood transfusions and has lengthy medical treatments every week for Diamond Blackfan Anaemia (DBA) – a rare illness which means that he is likely to have serious health problems if he survives into his teenage years without undergoing a bone-marrow transplant.
His parents, Caroline and Ben, have led a fundraising campaign which has raised more than £70,000 for screening and IVF, in the hope of having a tissue-matched baby without the condition. They had hoped cells from the baby’s umbilical cord could give William the lifesaving bone-marrow transplant.
But scientists have now found that William has “gene recombination”, which means his genetic make-up does not match his mum and dad’s and means a complete match, his best chance for a successful transplant, is highly unlikely.
Against all of the odds, scientists found one of the 22 embryos tested was thought to be a complete tissue match, but sadly Mrs Rhodes did not become pregnant.
Despite the setbacks, they have vowed to keep trying for a complete or partial match and will begin IVF again in the coming months.
Mrs Rhodes said: “As William is growing and trying to become more active, his illness is really having an effect on his day-to-day life.
“As a smaller child he didn’t really require the energy levels he does now and at times he struggles to keep up with his friends and tires very easily.
“He often complains of tiredness and aches and pains in his legs. This is very upsetting for him and for us as his parents.
“He has treatment five times a week where he is attached to a machine via a needle in his leg. This gives him a slow infusion of medication over 12 hours to try to remove some of the excess iron from his little body.”
She said that although William had been on his current therapy for nearly two years, he still has not got used to the continuous needles.
She said: “In fact it’s actually got worse as he has got older and more aware of everything.
“It is heartbreaking for us as parents, he now often says to us ‘I don’t want my needle in tonight, it really hurts me sometimes, I don’t want it any more’.
“We try to explain to him that without it he would get very poorly. The truth is, if he didn’t have this treatment he would not survive, as the iron overload in his body would lead to his organs shutting down and his heart would fail.
“It’s a very worrying, stressful and upsetting journey for us, but we’ve just got to stay positive and hope that one day we will be able to have a healthy baby brother or sister for William and, at the same time, the cord blood from that baby would make William better and be free from the daily torture of medical treatment and all the worrying side effects that come with it.”
William, a pupil at St Paul’s Nursery, has recently been granted a wish by the Make A Wish foundation, which will fund a family holiday to Disneyland in Florida next year.
For more information or to donate money to the fundraising effort, visit thewilliamrhodesappeal.com