One more guest blog for Organ Donation Week, from our good friend, Michelle…
Live Loudly, Donate Proudly
I was recently chatting to David, Lucia’s wonderful Daddy. We were talking about what I do, the support we provide, and the privilege it has been to know Lucia and to continue to be part of her lovely family’s lives.
Our conversation made me stop and think about the nature of my role and the extraordinary privilege of working with so many amazing children, young people and families affected by childhood liver disease.
It also made me reflect on Lucia – her journey, what she meant to me and to my team, and the message she left behind: live loudly, donate proudly.
There is no expected journey with childhood liver disease. Over the years, through my work with families, I have witnessed so many different pathways. Some are filled with joy and milestones; others are incredibly difficult and, sometimes, devastating. But every one of these journeys is extraordinary because of the adversity that children and young people, their siblings and their parents can face.
Lucia’s family have experienced the unimaginable loss of their daughter. Yet they continue to be such a shining light within our liver community. I know that must take enormous courage, particularly when so much of what they do can bring back memories of the daughter they lost.
But Lucia’s family want her life to be celebrated. They want her story to continue to make a difference. And they want the message of organ donation to be heard.
Because Lucia was given the gift of a liver transplant. That gift gave her the opportunity to live loudly – to experience life, to make memories, to love, to laugh and to make an impact on the people around her.
It just wasn’t long enough.
That is why the message of Live Loudly, Donate Proudly is so important. Lucia’s story reminds us that organ donation really can give someone the gift of time and the opportunity to live a life that might otherwise not have been possible.
And so, every day, I count my blessings for my eight years as Head of the Children and Families Service – first with Children’s Liver Disease Foundation and now with Liver UK – and for the privilege of being part of the lives of so many amazing children, young people and parents, just like Lucia.
Why do I consider it a blessing?
Because every day I see children and young people living with something they never asked for and, often, cannot control. I see their dignity, their bravery and, above all, their resilience.
They face challenges that many people will never have to experience. They have hospital appointments, procedures, medication, uncertainty and sometimes major surgery or transplantation. They have to live with a condition that can shape so much of their childhood and adolescence.
And yet they keep going.
Of course, it isn’t always easy. There are the “why me?” moments. There is frustration, sadness, fear and anger. There can be a huge emotional toll, and those feelings can return at different points throughout their lives.
I feel incredibly lucky that my role means I can be alongside them during some of those moments – listening, helping, advocating and trying to make things just a little bit easier.
I also think often about siblings.
Life can sometimes revolve around the child with liver disease. Parents are doing everything they possibly can to care for all of their children, but hospital stays, appointments, emergencies and the needs of a poorly sibling can inevitably take up so much space.
Siblings can find themselves feeling as though they are never quite at the top of the priority list, even when their parents love them just as deeply. And, at the same time, the child with liver disease may simply wish they could be like their brother or sister – healthy, carefree and able to do the things that other children take for granted.
It is a complicated and often painful conundrum, and there is no simple solution.
And then there are the parents.
I have an unwavering admiration for the parents I work with. They live with an uncertainty that no parent should have to face. They can feel completely out of control, anxious and frightened about what the future might hold. They want the very best for every one of their children and somehow keep going, even at times when they feel they have nothing left to give.
They often put themselves last.
They are always ready for the next appointment, the next hospital admission, the next treatment, the next challenge. I know how hard it can be. I know that sometimes they wonder how they will keep going.
But somehow, they do.
They are my heroes.
Actually, I am in awe every day of everyone I work with – children and young people with liver disease, their siblings and their parents. There is so much for them to deal with, and while I would never want to suggest that they simply have to be brave or resilient, I see every day the incredible strength it can take to navigate life with childhood liver disease.
And on the days when it all becomes too much, that is where we come in.
We cannot take the liver disease away. We cannot make every difficult decision easier or remove every fear. But we can listen. We can provide practical support. We can help families feel less alone. We can share the burden, even if only for a little while.
It is our privilege to do so.
Sadly, there are also days when the children and young people we know and love become so unwell that they do not survive.
We felt this most deeply when Lucia died in 2020.
Lucia’s death changed the lives of everyone who knew her. For me, and for my team, it was an incredibly painful reminder that while we hope for the very best for every child and young person we support, we cannot always change the outcome.
But Lucia’s life continues to make a difference.
Her family have chosen to keep her light shining. They want Lucia to be remembered for the way she lived, not simply for the way her life ended. They want people to understand the difference that organ donation can make. And they want other young people to have the opportunity that Lucia was given – the opportunity to live.
So when I think about Lucia, I don’t only think about the sadness of losing her.
I think about her laughter. Her determination. Her impact. The people she inspired. The difference she made. And the legacy she has left behind.
Live loudly. Donate proudly.
For Lucia, those words were more than a campaign.
They were a way of living.
And they are a reminder that every life matters, every moment matters, and that the decision to donate our organs could one day give someone else the most precious gift of all – the gift of more time.
For Lucia.
For her family.
For every child and young person waiting for a transplant.
Live loudly. Donate proudly.
