Four-and-a-half-year-old Myles Jordan is bubbly, outgoing and full of imagination. His mop of blond curls and beaming smile are a regular sight around the wards and corridors of the hospital.
But shortly after he was born, Myles was diagnosed with an extremely rare condition called congenital nephrotic syndrome, which means that the filters on his kidneys don’t function correctly.
At just 16 days old, Myles was admitted to Temple Street – and he stayed with us until he was almost one.
Sadly, Myles had to have both his kidneys removed – the first when he was just four months old and the second just before Christmas. This means that he now has to have dialysis every single day in his home in County Meath.
Myles now needs a kidney transplant and he has been on the waiting list for the past few months. Myles’ parents Eavan and Sasha say that the average waiting time for a kidney is 18 months, but it can be longer depending on the patient’s circumstances.
Daily life is tough for Myles. He must take a variety of medications, which can really tire him out. He’s fed through a tube in his tummy and he is on a very limited fluid allowance. The toxins in his bloodstream mean that he’s not as active as he would like to be; he can even vomit if he runs too much.
Despite what he goes through every day, Dad is happy to report that Myles remains sunny. “For him it’s normal because he knows no different. There are times when he’ll spend the whole day saying, ‘I feel sick.’
But he’s so used to feeling sick that it’s just the way it is for him.”
Parents Sasha and Eavan were tested as potential live donors, but unfortunately giving their kidneys wasn’t a possibility. Sasha says that Myles’ warm and friendly disposition means that he’s had no trouble making friends with both patients and staff alike! “He has such an outgoing personality, he knows everyone in Temple Street and everyone knows him. He really is a brilliant little fella.”