Three years ago this week, Kayleigh Taylor was waiting in hospital, preparing to undergo a transplant operation that would save the life of a seriously ill baby.
That child, Tommy, is now a healthy and thriving three-year-old boy – and his story has inspired a new charity to help the families of other children born with the same condition.
Just 12 months since its launch, Tommy’s Journey has raised more than £10,000 – in large part thanks to Cavendish-based Precision Made Joinery, where Kayleigh works as office manager.
Kayleigh and Lauren with directors Scott Grimwood and Craig Green and staff at Precision Made Joinery
“It made us realise that so many families have to spend months in hospital,” she told SuffolkNews.
“If that was me and my baby, I would have had to continue working, because we wouldn’t be able to keep the roof over our heads otherwise.
“But that’s so difficult, not being able to spend every minute with your baby, so we want to raise money to ensure families can stay by their child’s side.”
The story began in 2021, when Kayleigh’s best friend, Lauren, gave birth to Tommy, who was then diagnosed with neonatal hemochromatosis.
This is a rare disease affecting infants, which causes a build-up of iron in the liver, with severe health consequences.
At four weeks of age, Tommy was considered the most urgent case in the UK for a liver transplant, with Kayleigh stepping forward to help save his life.
Kayleigh explained that the time between learning she could donate a piece of her liver to Tommy, and then undergoing the transplant, was only around 10 days.
She initially feared that her own Gilbert’s syndrome, which is a common liver condition, might prevent her from being a donor.
After being given the all-clear following checks at King’s College London (KCL) Hospital, she was told Tommy was too poorly, but he then stabilised, meaning the surgery could go ahead.
“I was only in hospital for a week after the surgery, and came home on Christmas Eve 2021,” Kayleigh said. “Tommy came home at the end of March 2022.
“He met all of his milestones, and he’s doing really well now. I’m completely fine as well.
“Lauren and I kept saying we wanted to give something back. We decided that, if we set up an official charity, we could support people.
“There’s no other charity in the country that specifically supports families of children with neonatal hemochromatosis.”
Having launched Tommy’s Journey in November last year, Kayleigh received a huge helping hand from her employers at Precision Made Joinery, based in Pentlow Lane in Cavendish.
Led by directors Scott Grimwood and Craig Green, the company raised more than £10,000 for the charity, through events like race nights, walks and a sponsored skydive.
“When Scott and Craig said they would support us, having the backing of a company has really helped spread the word,” said Kayleigh.
“We’ve raised £12,000, of which £10,000 came from Precision Made Joinery. To be honest, it has blown our minds, because we couldn’t have done it without them.
“All of their contacts, suppliers and customers, we have managed to get all of them involved. It’s just incredible.
“They are so passionate about it and have got so behind it. It has way exceeded what we could ever have imagined.
“As of now, we’re available to help. We’re in touch with KCL Hospital, and they are the main port of call, and will contact us if a family needs help.
“We will support any family with a baby with neonatal hemochromatosis, but we want to broaden that to any baby who needs a liver transplant.
“We want to make sure these families don’t ever have to leave their baby’s side, and take that financial strain away from them.”
To learn more about the charity, go online to www.tommysjourney.org.
In addition to the financial support, Kayleigh also wants to use her own experience to help advise other people who are considering making a living organ donation.
So far, she has spoken to two other potential donors referred to her by KCL Hospital – both of whom went on to have successful operations.
“I think a lot people don’t realise they can be a living donor,” she added. “For me, I didn’t have time to think about it, but I know some people are really scared to go through surgery.
“I’ve got two children myself, so I understand how it can concern people. I’m there to talk through it and give a really honest view of what happens.”