In grief we know that those affected are not only those closest to the centre. Funerals may gather hundreds, thousands, though far fewer in these days of Covid. So it is with the new life of a baby, and in these stories, the new life given by a donor to a transplant recipient. The lives of those most immediate to the new recipient change, and so do many more as the person regains their space, living more fully, even loudly. New life, though vulnerable, is exciting, contagious, and has impact well beyond the person in the centre. Fanni tells it beautifully here, and leaves us with two invitations – have the organ donor conversation, start it somewhere else, spread it round. It may matter more than changing the law. Then, if you will, consider supporting Fanni’s petition to have organ donation education on the National Curriculum so it may become something we can grow up with as a natural part of living and caring for each other…
My name is Fanni Doroti Polgar, I am fifteen years old and I am the sibling of an organ transplant recipient. Nine years ago (soon to be ten), my little brother, Kristof, underwent a liver transplant at the Birmingham Children’s Hospital after being diagnosed with a rare genetic liver disease called PFIC (Progressive familial intrahepatic cholestasis).
I have always looked for my purpose in life, and when Kristof came into this world, I found it. My purpose is to be the best big sister I can be, to make him feel included, to encourage him to dream big, to make sure he has a magical childhood in which nothing is impossible and most importantly to be his best friend, so that he always has someone who understands.
Before his transplant at the age of two (six days before his third birthday), he couldn’t walk, talk or even eat and my dad became his full-time caregiver. It wasn’t easy seeing him unable to do the things that children at his age should be able to and my parents experienced a lot of additional worry and responsibility. If you are a parent yourself reading this blog, I am sure you would agree that as a parent, you would go to any length to do what is best for your child and protect them from all the cruel things in this world. However, for my parents this wasn’t always possible, and I can imagine that must have been incredibly hard.
Personally, as a sibling, I often felt like I wasn’t as important as my brother as a result of my parents having to spend a lot of time with him in hospital, at different appointments and at home. Don’t get me wrong, my parents are simply amazing and I couldn’t be any more grateful for them and everything they have done for us both, but I often felt isolated and kept many worries to myself as they didn’t seem big in comparison to what my parents were dealing with in relation to my brother. I was only six years old at the time and became good at hiding my emotions quite quickly. I also experienced the feeling of guilt – why do I get to be healthy and my brother doesn’t? Why does he have to be in hospital when I get to stay at home and go to school?
Throughout the years, as I have got older and began to see the bigger picture, I have realised that my brother’s condition is not my fault, it’s nobody’s fault, and that my parents love us both equally and that I am not any less important. If I had been in my brother’s position, my parents would have done the same for me. I’ve also come to understand that what I was feeling at the time was completely normal for someone in my situation and that there are so many other siblings feeling the same way. So, if you reading this blog are a sibling of a transplant recipient or your sibling is on the transplant waiting list, remember that you are not alone.
Following being listed on the organ transplant waiting list, my brother waited a total of three weeks until the call came. For some, the wait for this life-saving call doesn’t come for several weeks, months, years and, heartbreakingly, for some the wait turns too long. This is part of the reason why I am here writing this blog today. Three people are still dying every single day due to the shortage of donors and this should not be the case. Kindness, empathy and a short conversation with your loved ones are the keys to saving lives. Every one of us has the chance to save lives after we have passed away, how amazing is that?
Kristof’s operation lasted over six hours and within days of receiving his new liver, we began to see small improvements. His eyes were no longer jaundiced, and he was able to start eating. A few weeks passed, and he was discharged from hospital.
Almost a decade later, I am here writing this blog. Kristof is soon to be a teenager (where has the time gone!), enjoying playing sport (football and table tennis in particular), spending time with friends and he has just started his second year in secondary school. He is the kindest, most downright hilarious and caring young man you could ever meet. I couldn’t be prouder of how far he has come since his transplant and his journey really just comes to show how much of a difference a new organ can make to someone, as well as their loved ones.
Kristof is my whole world and more. I could never imagine life without him. I can’t thank his donor and donor family enough for the second chance they have given him and our family by saying yes to organ donation. There’s no greater gift than the gift of life and we have been blessed to receive it.
I would also like to take this opportunity to share with you a petition I have started recently in the hope to make basic education about organ donation a compulsory part of the secondary school curriculum here in the UK. I believe that education is the key to change, and by educating young people we can save so many more lives and get the nation talking about their wishes. Education in schools is also one of the aims of Lucia’s campaign, Live Loudly Donate Proudly. The petition is on change.org, please take a look and share the message.
As I come to the end of writing this blog, I would like to say a massive thank you to Lucia’s family for this opportunity to share my perspective of organ donation during organ donation week; what a wonderful idea to help raise awareness and continue the incredible project which Lucia started. I would also like to thank you for taking the time to read this blog. Please, have the organ donation conversation with your loved ones, because by saying yes to organ donation you’re not only saving lives, but you’re also giving someone’s mum, dad, daughter, son, brother, sister or friend more precious time with their loved one and a second chance to make memories and enjoy the gift of life.
Fanni Doroti Polgar