A Derry mum has said that it was ‘devastating’ to find out her 11-year-old daughter would need a kidney transplant after she experienced renal failure over the summer and has since needed dialysis six days a week.
Alison Caldwell is appealing for people to consider organ donation after her daughter, Reagan, was rushed to the Royal Victoria Hospital (RVH) for Sick Children from Altnagelvin in Derry back in June following what she thought was a normal doctor’s appointment.
“I happened to take her to the doctors because I noticed that she had more bruising on her leg than would be typical for a ten-year-old,” Alison said.
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“I thought maybe it was iron or something.
“When I was in, the doctor said I’m going to do urgent bloods for you.”
Later that evening, she received a phone call from her doctor while Reagan was playing in a nearby park.
“I was told to go straight up to Altnagelvin [Hospital] and don’t even bother collecting jammies,” she said.
“Once I got up to the ward, they were waiting for me. They were just fussing at Reagan and then the doctor said to me, ‘She’s in renal failure’. It was just as if I hit a wall or something.”
The next day, Reagan was rushed from Derry to Belfast in an ambulance – the initial shock, Alison said, was too much to take in.
“It just knocked me. To me, it just didn’t seem as if this was happening. I couldn’t take it in.
“There was that much coming at me.”
Reagan was kept in hospital for three weeks as doctors tried to lower her blood pressure and raise her iron levels, among other issues.
Within the first week, Alison was told the ‘devastating’ news that her daughter would need a kidney transplant.
“I’m trying to get my head around [the fact] that she has renal failure, she’s going to have to go on dialysis and I know, then, that she has to get a transplant,” she recalled.
“I just couldn’t believe that this is what it was.”
Results of a biopsy revealed that Reagan has a genetic condition called nephronophthisis, caused by a mutated NPHP1 gene.
Research shows that the condition is one of the leading causes of end-stage renal failure in children and, according to the UK Kidney Association, has a one-in-four chance of occurring if both parents are carriers.
Since July, Reagan has been on dialysis six times a week for eight hours each night, which can cause her pain and sometimes leave her sick.
“If she’s sick, she can’t go to school – and she loves her wee school.”
However, her mum said that she has been strong in the face of such challenges.
“She has been fantastic – very little complaining about it, she just gets on with it. It would be really at nighttime; it can hurt her. She would say to me, ‘Can you please take this off me?’ but there’s nothing you can do, you just have to work through it. At night, when she’s crying and breaking her heart, it’s devastating.”
Alison says that the hope of finding a matching donor soon is what has helped them through a difficult six months.
“We just keep thinking, ‘Hopefully this time next year it will all be over’.
“She can’t wait to get this machine out of her room.
Her daughters and their partners have already been tested and are awaiting results, while Alison herself if getting tested this week – something she wouldn’t have ever considered a reality for her before.
“I suppose that’s like every family; you don’t think about it until it happens.
“I would just love for someone, for everyone, to have a think about organ donation,” she added.
“I know this mightn’t help Reagan, but it might help somebody else and their family that’s going through it, because this is devastating.”
