When Joanna Perry looks at her daughters today, she sees two thriving girls with bright futures. Lucie, her eldest, is 16 and has just started Sixth Form, studying art, textiles and biology. “She’s a real artist,” says Joanna proudly. “She could spend all day drawing.” Her younger sister, ten-year-old Isobel, is in her final year of primary school. Confident and determined, she’s preparing for the step up to secondary school next year.
Lucie and Isobel Perry with mum Joanna, pictured in 2020.
To anyone meeting them now, Lucie and Isobel appear just like other children. But their lives, and those of their parents Joanna and Phil, have been shaped by an extraordinary journey. Both girls had the same rare heart condition, dilated cardiomyopathy, which causes the heart to enlarge and fail. Both suffered cardiac arrests. And both, against the odds, received the ultimate gift: a new heart.
A mother’s worst fears, twice over
Lucie was just two when, in 2011, doctors realised something was seriously wrong. After repeated chest infections she was referred to hospital where scans revealed her heart was dangerously enlarged. Within months she suffered a cardiac arrest and was transferred to Great Ormond Street Hospital (GOSH). Eight days after being placed on the urgent transplant list, the call came.
“She was so tiny, but her own heart had grown too large,” recalls Joanna. “She ended up receiving a teenager’s heart. The doctors said her body would ‘grow into it’. And she did. She bounced back with the resilience only little ones seem to have.”
The relief of Lucie’s transplant was followed by fresh devastation in 2018 when Isobel, then three, was also diagnosed with dilated cardiomyopathy. At first she seemed well, but within months she deteriorated before going into cardiac arrest and being placed on ECMO, a machine that temporarily takes over the function of the heart and lungs.
Her journey was even more complicated. She suffered a major bleed on her brain and doctors were unsure if she would survive, let alone be eligible for a transplant. Joanna remembers being told to prepare for the worst. “At one point the palliative care team came to see me. They didn’t think she was going to make it. They even said that if she did survive, she would be paralysed down her left side.”
But Isobel defied every expectation. Determined and full of spirit, she responded to treatment and was eventually listed for transplant. Incredibly, just ten days later, she too received a donor heart.
The lifeline of a ‘Home from Home’
For both transplants, many years apart, the family were supported by The Sick Children’s Trust, staying at Guilford Street House, just minutes from GOSH. Having somewhere to stay close by meant they could be together as a family, including Lucie and their son Jude, while still focusing on the child in hospital.
In 2019 the Perrys met Michael Crawford, President of The Sick Children’s Trust, at Guilford Street House.
“When you’re told your child is waiting for a heart, you live on a knife edge,” says Joanna. “To be able to go back to Guilford Street House, close the door and shut the world outside was a blessing. It gave us space and comfort at a time when we were constantly being told devastating things.”
When they returned years later with Isobel, the memories of their first stay came flooding back. “It was strange to walk back through that door. I thought I’d closed it for the last time. But we were welcomed again with the same warmth and understanding by the wonderful house staff. That support carried us through the darkest days. It made such a difference to us all – the house felt like an extension of our own home.”
The gift of donation
The family’s experiences have made them passionate advocates for organ donation, although Joanna admits she wasn’t registered as a donor before Lucie’s transplant. “I was squeamish about it. But when you’re told your child needs a heart, you can’t think like that anymore. You can’t be willing to take if you’re not willing to give. Now, all of us are on the register.”
“If people could see what it means, the difference it makes to families like ours, they wouldn’t hesitate. To be told there’s a heart available is like winning the lottery. It’s the greatest relief you can imagine. But behind that joy, we never forget another family has lost a child. We carry that with us always.”
Looking forward with hope
Lucie Perry in her prom dress, 14 years after her heart transplant.
Today, Lucie and Isobel are busy with school, friends and the everyday ups and downs of life. Lucie dreams of pursuing art after her A levels, while Isobel has thrown herself into her final year of primary school with her characteristic confidence and humour.
While Joanna still lives with the anxiety of what the future may hold – rejection remains a risk, and transplanted hearts don’t last forever – she has also learned to focus on what matters most. “When your child has been through something like this, it changes your outlook. I just want them to be happy. I don’t mind what they do, as long as they make the most of their lives.”
As Organ Donation Week reminds us, the gift of life depends on the selflessness of others. Lucie and Isobel’s stories show just how incredible that gift is.
About Organ Donation Week
Organ Donation Week is a week-long campaign that takes place every year, with the aim of raising awareness about the ongoing need for organ donors. The more people who register their decision to become organ donors after they die, the more lives are saved. With The Sick Children’s Trust supporting numerous families with children needing transplants, we are passionate about ensuring that the vitally important conversation around child organ donation continues.
Family support for child organ donation
- In the UK, families will always be asked to give their consent for organ donation from a child to go ahead.
- There were 39 child organ donors in 2023/24. In the same period 252 children received a transplant, 151 from a deceased donor and 101 from a living donor.
- In 2023/24, eight children sadly died on the waiting list for an organ transplant. More young donors are needed to help the children waiting for a lifesaving transplant.
- In cases where a child was already registered on the NHS Organ Donor Register, no family went against this decision.
If you’d like to learn more about organ donation or wish to register as an organ donor, please click here.
The Perry family, pictured in 2020.
