Being told your child might die is too much for any parent, but reliving that experience with another child is incomprehensible for anyone.
This was the reality for mum of three, Joanna Perry, when in 2012 her eldest daughter, Lucie, waited for a lifesaving heart transplant and seven years later so did her youngest, Isobel.
From 20 May 2020, all adults in England will be considered to have agreed to be an organ donor when they die unless they recorded a decision not to donate or are in one of the excluded groups. Despite this new change to the law, this is not applicable to under 18s meaning children like Lucie and Isobel will still face the same agonising wait for a donor organ as before. Support for their families from The Sick Children’s Trust will be just as important as ever as often these children undergo treatment at hospitals far from home. Joanna said:
“My husband, Phil, and I were told we could be waiting for up to a year for a heart to become available for Lucie, and while we faced an indefinite wait we were given a place to stay by The Sick Children’s Trust at its Guilford Street House. This meant we didn’t have to move around every day and could focus our energy and time on Lucie. It also meant that Lucie’s brother Jude, who was just a few months old, could come and stay.
“Last year, I walked through the same door I had closed for what I thought would be the final time after Lucie received a donor heart. Suddenly I was back where I left, unlocking the door to The Sick Children’s Trust’s ‘Home from Home’ Guilford Street House. where I could rest while my youngest daughter, Isobel, waited for a lifesaving donor heart just like her sister had.
“For anyone who has doubts about whether to become an organ donor, all it would take is a visit to the cardiac unit to put pen to paper and sign the register. Before Lucie needed a transplant, neither Phil nor I were organ donors but we soon became desperate for a heart for our daughter and years later for another one for Isobel. You can’t be willing to take if you’re not willing to give. All of us are registered organ donors now. Lucie recently asked ‘Why wouldn’t people donate their organs? It’s going to help someone.’ Maybe the answer is people don’t understand the difference it makes. The comfort it brings.”
The Sick Children’s Trust plays a vital role in supporting families with children waiting for an organ transplant by giving them a place to stay in its free ‘Homes from Home’, located just a few minutes’ walk from children’s hospital wards. Even now, during these unprecedented times, the charity is keeping its doors open to families with critically ill children in hospital, ensuring that they can be together as much as possible.