When Sarah Bingham found out that her daughter had been diagnosed with a rare illness that would mean she would need a kidney transplant, she did not hesitate to see if she could donate.
While her husband, Darryl, 49, was not a match, the mother of three was – and so the family prepared for her to give one of her organs to Ariel.
But while the couple rallied around their daughter, they had no way of knowing that three years later they would be faced with their eldest son falling ill with the same condition, also leaving him needing a transplant.
Both Noah, 20, and Ariel, 16, have nephronophthisis, which causes inflammation and scarring to the kidneys.
Once again, Mrs Bingham 48, was found to be a match for her son while sadly, her husband was not.
“My kidney was the obvious choice for Ariel because as far as we knew at that time she was the one who needed a transplant.
“The plan was always that once we got to that point, I would start my workup and they’d get me ready and we’d go ahead with the transplant.
“So when Noah then went into renal failure in 2019 it was a bit of a shock to the system.
“Suddenly, we were faced with the fact that we have two children with the same condition and we knew that they both needed transplants.
“I do feel torn. It feels really hard because as a parent you would help both children if you could but obviously, you can’t.,” said Mrs Bingham.
Mrs Bingham said two friends have since come forward who are matches for Noah.
Mrs Bingham and her daughter Ariel
Transplanted kidneys last on average around 10-15 years meaning that both children will likely need another transplant in the future.
“If I’ve donated a kidney to Ariel at some point it will fail but also her body could reject it and in both cases she will be on the deceased donor list. Or, we would have to look for people willing to donate.
“So it’s this constant knowing that they will need this again because the transplant only acts as a longer term treatment. Once I donate a kidney to Ariel that’s not the end of the road – there is no cure.”
The family hopes their story will highlight the need for people to have conversations with their loved ones as to what their wishes are and if they don’t want to ‘opt out’ of kidney donation.
Adults in England are now automatically considered organ donors when they die unless they have recorded a decision not to donate or are in an excluded group.
But numbers of donations are still low. There are around 5,000 people on the urgent waiting list for a kidney transplant operation but last year only 3,265 people received a kidney-only transplant.
Around five people die every week whilst waiting for a transplant.
The Binghams, who have chosen to share their story in aid of Kidney Research UK, live in Hexham, Northumberland, also have son Casper, 12, who will be tested for the condition, which is caused by “homozygous deletion” of a gene known to scientists as NPHP1 in February.
Meanwhile, Noah is recovering in hospital from an operation on Wednesday after problems over Christmas meant he needed to replace his feeding tube and peritoneal dialysis (PD) catheter, which allows him to be on dialysis at home.
Noah, who had been due to study astrophysics at the University of Central Lancashire when he was diagnosed, now hopes to put on enough weight for a transplant.
Ariel, who was diagnosed in 2016, continues to have her kidneys monitored. At the time of her diagnosis their function was at 25 per cent and this has continued to deteriorate but her mother is on standby for when the doctors believe it’s sensible for a transplant to go ahead.
Dr Maria Tennant, head of communications at Kidney Research UK said: "Sarah and her family’s situation brings home the cruel reality of kidney disease. There are not enough transplants available for everyone who needs one and dialysis can be really tough.
"We are investigating ways to make more kidneys available, to make transplanted kidneys last longer and how to stop people needing a transplant wherever possible. But the pandemic has hit us hard and we need support more than ever. We’re so grateful to Sarah for sharing her story and helping us in the fight to end kidney disease."
To make a gift to Kidney Research UK and help researchers find ways to stop this happening to other families call 0300 303 1100 or visit https://kidneyresearchuk.org/support/donate.