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 doing absolutely amazingly. Since his kidney transplant he has flown through his recovery which was unexpected because his body struggled so much after his heart transplant. He is getting so tall now and looks fit and healthy, he is also back to school full-time. His teacher saw him walk down the corridor and didn’t even recognise him because he looks so different. He eats everything in sight, 24/7. He never stops, he never sits down and he is never out of breath. He is a totally different child, with the attitude of a teenager, and is really happy. The only struggles we are facing now are conversations around what happens if his heart and kidneys stop working, he gets quite upset and struggles to sleep. We are working through this though, together. Frankie still hasn’t done lots of the things other children his age have – but he’s still done more than he has done ever. We are hoping to brave the soft play soon ahead of a holiday to Butlins which is both exciting and terrifying!”
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:
“Peter is doing great now. He is currently waiting to go back over to Freeman Hospital for more open heart surgery to fix a valve but other than that he is doing fantastically. He is the best big brother ever to his little brothers and sister. He loves to help the lads and is living a somewhat normal life under the circumstances of COVID. He even finally was able to go to Thomasland after waiting over two years to go! It was a huge moment for him and us. I am so proud of Peter, he is a bright, intelligent boy and no matter what is thrown his way he just gets on with is and does it.”
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:
“Ehryn has been keeping really well over the last few years, she has only had a couple of routine admissions for surgery to try and reduce the difference she has in her leg length following her tumour removal at the start of her journey. She has become a more confident, independent girl and enjoys normal things like everyone else does and is so determined to do what others are doing. She really does try anything there’s no such as a thing as; “No, Ehryn, you won’t manage that. She enjoys going to Guides and has recently started acro-hoop and loves her horse Barney. In August she started high school and was really excited but apprehensive too. Ehryn is fully aware of organ donation and would like people to think about donating as she knows if it weren’t for her donor she wouldn’t be here today. As a family, we would encourage everyone to ensure their families are aware of their decision. We know first-hand the difference it can make. To see Ehryn now is just amazing and we know had it not been for the brave, selfless decision a family made six years ago we wouldn’t be where we are today and would have faced a future without Ehryn.”
Read more from the families we have helped here.
