Nicola Kelleher’s partner Bradley Benjamin has a hereditary kidney disease which has seen him suffer on dialysis for years – and they didn’t want the same outcome for their child
When Nicola Kelleher’s partner of 18 months came to her saying he needed a kidney, without question she offered her own.
At just 26, it was a selfless act for the man she loved.
While the actress wasn’t a blood match, surgeons were eventually able to carry out the transplant, although it came with complications.
Around 10 years later, it began to fail, and for the past four years, her partner, Bradley Benjamin, has been on gruelling dialysis to keep him alive whilst they await a new match.
He has a rare hereditary kidney disease called Polycystic Kidney Disease (PKD) – which his mother also suffers from while his grandfather also had it.
Bradley, now 43, didn’t know he had the disorder – which causes a cluster of cysts to develop within your kidneys, causing your kidneys to enlarge and lose function over time – until symptoms developed at 26.
When the couple were offered the chance for their future child to not inherit the same potentially life-threatening disease, it was a no-brainer to not see their baby suffer in the same way.
“It is really important as it means our family will never go through that again,” Nicola, 41, told the Mirror.
“Even if there are people in the family who are carriers of gene, because they don’t have the actual disease, the risk of passing it on is very very low.
“If Ivy was born with it, future generations would have had it as well. She’s a really important baby for the future.”
Nicola, from Bournemouth and now lives in London, met Bradley in 2004 at drama school and they began dating a year later.
Bradley, also an actor, was diagnosed in 2007 with renal failure – where your kidneys can no longer function alone – whilst they were studying.
Tests showed he had PKD and if he hadn’t gone on dialysis immediately, he would have died within a fortnight.
While Nicola, who also works as a Clairvoyant, offered up her kidney immediately, they weren’t a blood match.
They went into a transplant pool instead – where they could swap Nicola’s kidney with another healthy kidney from someone else, however with only a suitable kidney from a 50-something-year-old, it wasn’t deemed a fair exchange.
By 2010, with no other match available, surgeons said they could transfer Nicola’s kidney, however she says it was damaged during the procedure.
Bradley carried the donated kidney successfully for around 10 years before it began to fail.
Around four years ago they were told that he was losing the function of the kidney and he was placed on dialysis immediately.
It’s now a waiting game for him to find a new kidney donor, which will be harder the second time around due to the antibodies built up after the first transplant, making it more likely for his body to reject it.
But his daughter Ivy, now three-and-a-half, will never have to suffer from the same lifetime of illness and worry thanks to gene therapy.
Her life-saving treatment came about following Nicola’s miscarriage.
In 2014, she fell pregnant unexpectedly but lost the baby 12 weeks later.
When she went to the doctors for health checks, they said her miscarriage could have been explained by her low thyroid – which can interfere with the release of an egg from your ovary, which impairs fertility.
But it was during these checks that the couple were recommended to have IVF and gene therapy – in a bid to stop Bradley’s disorder from being passed on, where there was a 50/50 chance.
They were eligible for three rounds of treatment on the NHS, and completed the first round.
“The whole process took about five years because they had to find the gene first that caused Bradley to have the disease,” Nicola, who is set to appear in a new film – Control – alongside disgraced actor Kevin Spacey, explained.
“They took blood from his parents and managed to find the sequence in his mum’s side, which made sense.
“Once they found it, when they went on to make the embryos out of Bradley’s sperm and my egg, they then tested the embryos for that gene sequence.
“Out of five embryos, two of them had the gene.
“The first embryo failed but the second I got pregnant with Ivy.”
Just this week, the fertility regulator confirmed a baby has been born using three people’s DNA for the first time in the UK.
Most of their DNA comes from their two parents and around 0.1 per cent from a third, donor woman.
The pioneering technique is an attempt to prevent children from being born with devastating mitochondrial diseases – which are incurable and can be fatal within days or even hours of birth.
Some families believe this technique is their only option for them to have a healthy child of their own.
But for some, genetic treatment can be seen as unethical, with a debate circulating as to where the line should be drawn.
For Nicola and her family, she says it’s a matter of life and death and has nothing to do with aesthetics.
“When I was working on a play I had a conversation with one of the actors about it, and one person said ‘Isn’t that like playing God though?'” the mum-of-one recalled.
“I was like ‘I can see your point but if I’d have gone on to have a baby with the same disease, it would have put incredible strain on the NHS in the future’ – not only would they have had to have treated her but she would have had a transplant, which costs around something like £100k.
“She would also have a lifetime of drugs so actually, by doing this, not only does it protect future generations but it also saves the country thousands of pounds.
“You’ve got to put yourself in our shoes. Would you want to see your baby in hospital potentially dying? No, no one wants to see that.”
Bradley has to have dialysis three times a week for four hours a time, while his mother is also on dialysis. He is unable to work due to ill health and is on a restrictive diet.
Fluids are limited to 750ml a day, which sees him having just a few sips of tea before throwing it away.
He has to be mindful of how much liquid is in his food, can become extremely fatigued and can be grumpy at times.
But with no family members able to supply a kidney, it’s a waiting game for Bradley to be able to get better.
“It’s quite stressful and quite depressing and many people that are on dialysis are actually on antidepressants. It’s such a horrible lifestyle,” Nicola admitted.
“Sometimes he can get back pain and pain in the area of his arm where he receives the dialysis.
“It is terrifying. I think all the time about how would I cope if he died and it’s not a nice feeling to have.
“The whole time we’ve been together, I’ve been the one to work around his dialysis, make sure everything is paid for.
“We don’t have anyone to take Ivy for even 30 mins, we have no support group. So I’m literally a headless chicken just trying to make everything work.”
With Nicola set to turn 42 this November, she and Bradley have been thinking about whether or not to have a second child.
They still have another embryo in storage but would have to pay for private IVF. It may or not implant to result in a second child, but it would mean more months of testing and injections.
She has used medical home tests from Biosure – which offers fertility tests, vitamin tests, and heart health tests among others – that help determine how healthy her egg reserves are, in case another egg retrieval was needed.
The results, set to arrive in a few days, will give her peace of mind and a way for her to ‘cut the queue’ essentially, not having to wait for GP appointments and referrals, and will help paint a clearer picture of where they might stand.
Whether Ivy becomes a big sister or not, her parents will explain how she came about when the time is right.
Ivy is a very happy and energetic little girl, the mum says, with her whole life ahead of her. Nicola added: “When I look at her I think ‘I am so glad we did that.’
“It would break my heart to see her ill. She is a healthy child and I’m grateful for that.”
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