ON THE SURFACE, Myles Jordan’s life isn’t much different to any other happy four-year-old boy.
Entering his home, you’re greeted by two smiling parents, a friendly family dog, and told about how much he loves playschool and is starting in primary school later this year.
However, Myles was born with congenital nephrotic syndrome and spent the first year of his life in Temple Street Children’s Hospital. His father Sasha explains that, put simply, this means a filter on his kidneys does not function correctly.
His mother, Eavan Ryan, said: “I think he’s so used to feeling sick it’s just normal for him.”
Both Myles’s kidneys have now been removed – one at four months old and another at just before Christmas. He is fed through a tube and undergoes nightly dialysis at his home in Ashbourne, Co Meath.
He is limited to a water intake of just 156ml per day, excluding what he receives from food and medication. He has to avoid physical activity, as even a short run could cause him to vomit.
Myles now needs a kidney transplant. The average waiting time for one is 18 months, but due to having to wait until he is physically large enough to receive a transplant – as well as a period of recovery after his last was removed – Myles has been on the list just two months.
Both Sasha and Eavan have more than one artery connected to their kidney, making surgery too risky, although they hold out hope a specialist may be able to take on the case.
As part of organ donor awareness week, we paid a visit to Myles and his family.
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