Every year, we support the NHS Blood and Transplant’s national Organ Donation Week (20-26 September) to help raise awareness of those affected by organ donation. As a charity, we support hundreds of families who have a child waiting for a lifesaving donor organ and despite the challenges the pandemic brought with it, we continued to keep 50 families together with their seriously ill child.
This year, we are shining a light on the families who have stayed with us in the past and the children who have received a donor organ.
Meet Frankie and his family
Frankie’s family have been supported by both our Newcastle ‘Homes from Home’. Initially we supported Frankie’s parents, Sophie and Chris, at Scott House while Frankie waited for a lifesaving donor heart. He waited 21 months and was often in hospital throughout this time but his parents could always be by his side and were there when he eventually received a donor heart.
Despite receiving a new heart, Frankie’s health continued to deteriorate and he went into kidney failure. He and his mum attended Newcastle’s Royal Victoria Infirmary three to five times a week as he underwent dialysis however, he needed a kidney transplant. Fortunately, Frankie’s dad was a match and he received the transplant last year. Just before lockdown.
Since having his kidney transplant, Frankie has come on leaps and bounds. Despite having to shield for the majority of the last 16 months, he is living life to the full. Mum Sophie said:
Frankie is also now the proud big brother to both Freddie and Georgie. We are so pleased to hear that Frankie is doing well since his kidney transplant and are pleased we could be there to support his family when they needed it the most.
Four of our ‘Homes from Home’ support families with children on the organ transplant list. We give them a warm and comfortable place to stay while they face the agonising wait for a donor organ to become available. Many of the families we support have to travel miles to get to the specialists paediatric transplant centres in the UK, some come as far as Ireland, like Peter’s family.
Meet Peter and his family
Shortly after Peter was born he was diagnosed with a hole in his heart, which the doctors hoped would fix itself without complication. However at six months old Peter was diagnosed with dilated cardiomyopathy where the heart is too weak to pump blood around the body efficiently.
At two and a half years old, Peter’s mum, Nikita, walked into his room to find him so weak that he couldn’t stand. He was rushed to Dublin where he was stabilised but his parents were told he was in heart failure and needed a heart transplant. The family were flown from Ireland to England where Peter was put on a Berlin Heart, a device which pumps the heart because his own was too weak to function normally. On arrival at Freeman Hospital, his parents were introduced to Scott House which became their ‘Home from Home’ during this time and when Peter received a life-saving donor heart.
Despite going into heart failure and suffering a stroke on the Berlin Heart, four years on Peter is doing incredibly well. Mum Nikita said:
As an organisation, we helped to change the law around organ donation. Max and Keira’s Law – presumed consent to donate organs where people over 18 have to opt out – was introduced in England in May 2020. While this law doesn’t affect children on the transplant list because they are under 18 years of age, we hope that by encouraging families to have open and honest conversations about organ donation we can help to save more children’s lives, like Ehryn’s.
Meet Ehryn and her family
In 2015, following a battle with a rare form of cancer and life-threatening sepsis, Ehryn needed a heart transplant. For two months, the brave youngster waited for a donor heart to become available at Newcastle’s Freeman Hospital, 300 miles away from home.
During this time her parents, Lyanne and Ross, were supported at Scott House which meant they could be with Ehryn every step of the way throughout her transplant and recovery.
Six years on, Ehryn is a determined young lady who doesn’t let anything get in her way. Her mum, Lyanne, said:
Read more from the families we have helped here.