A Derry woman whose daughter suffers from a rare genetic kidney defect has appealed to people in her home town to sign the organ donor register.
Tanya Taylor who now lives in Coalville, England explained that her husband Lee (33) would have died as a child if he hadn’t been given a kidney by a donor when he was 10.
The couple’s daughter Ashleigh was also born with the condition. She’s now 11 and the family have been warned that she will also need a kidney transplant at some point in the future.
So they have decided to start raising awareness to encourage as many people as possible to sign the organ donor register.
Tanya explained that Ashleigh was diagnosed with Nephrotic Syndrome when she was 13 months old.
“The hospital told Lee that he would never have children because he’d had chemotherapy which is one of the treatments to deal with the disorder,” said Tanya.
“Then when I became pregnant we were told there was no risk of the condition being passed on.
“When Ashleigh was born they didn’t do any tests and it was only when she got sick that we found out she had the same condition.”
Tanya, whose mum Pauline still lives in Galliagh, revealed that although her husband had his transplant 23 years ago, he is doing fine today and is one of the longest surviving children in UK who have had transplants.
At 11, Ashleigh is now one year older than her dad was when he had his transplant.
“Ashleigh gets very tired and the condition means sometimes her face can get swollen,” said Tanya.
“She is on a strict diet and we have to keep an eye on her fluid intake and potassium levels.
“But her kidney function is starting to slow down.
“In the next year there’s a chance that something could change. Nothing will be done until her kidneys are at 15%. Then they will look into dialysis.”
But ultimately Ashleigh will need a kidney transplant.
This can either come from a donor on the register or a family member.
“Anyone can come forward to be tested,” said Tanya.
“Family members or friends, as long as they meet certain requirements. That is why we are trying to raise awareness.
“People often don’t think about transplants until it affects them. I know I didn’t think about it until I got together with Lee. But now I believe everybody should sign up.
“In the long term you are saving someone else’s life. If you needed an organ you’d take one if it was offered wouldn’t you? If you would be prepared to take one you should be prepared to give one.
“Lee wouldn’t be here today if the parents of the girl who gave him the kidney hadn’t decided to donate. He knows that it came from a young girl who drowned.”
Tanya says they try to stay positive and not think too much about what the future will bring.
“It’s always in the back of your mind and some days I look at Ashleigh and see that she is so sick,” she said,
“And we know that if Lee hadn’t got the transplant he wouldn’t be here.
“But we are very honest with Ashleigh and she knows exactly what is going on, maybe we have told her too much.
“We use Lee as the example because he has been through it, and we explain that good things come of it.
“She goes to hospital every few months and has her bloods checked regularly.”
Tanya explained that Ashleigh has just returned from Orlando, Florida after being nominated for a trip by her consultant.
During the trip she got to swim with dolphins, visit parks in America and meet with astronauts.
“It was the trip of a lifetime,” said Tanya.
To learn more about organ transplants p log on to https://www.organdonation.nhs.uk