This week, it’s national Organ Donation Week.
In the UK, 36% of the population are currently signed up to the organ donor register. There are around 6,500 people waiting for a transplant. There are about 5,000 people who die each year in circumstances where they could donate their organs. And approximately three people die each day waiting for a transplant.
These are the stats. And let’s be honest – they suck. We need to change them.
Organ donation really is a miracle; it’s a simple fact that Hugo would not be here today without it. But as the stats above allude to, there is a real shortage of organs. Too many people are waiting for too long for their gift, because too many people are saying no. Many people believe that all you need to do to donate your organs is to be on the organ donor register, but this is not the case. It’s a great starting point, of course, but it won’t guarantee your wishes will be fulfilled. If you die in circumstances where you could donate organs, your family also needs to give their consent. And sadly, less than half of the families approached about donating their loved one’s organs agree to donate if they don’t know that was their relative’s wish.
As you’d expect, given our journey, that question would be a no-brainer for us. But for many families in that situation it can actually be a real burden; having to make a big decision at such a difficult time cannot be easy. We mustn’t pass judgement on the families that say no; we don’t know them or their situations, their reasons. But we can try to make their decisions easier, by talking about it. By having the conversation with our loved ones. It really is a matter of life and death for so many people – it may sound like a meaningless platitude, something that’s “easy to say” (it’s really, really not, by the way), but it’s the real, harsh reality of it.
Unfortunately I know this because last year, my extended family lost two very young baby girls within just a few days of each other. Daisy, part of my liver family, needed a liver. Marnie, whose mummy is one of my oldest childhood friends, needed a heart. Two families lost their darling girls – daughters, sisters, nieces – because their new organ simply didn’t come in time. These beautiful girls were just months old. They should still be here. It still breaks my heart to see their parents and families having to carry on without them. In spite of their heartache, both families have done wonders in keeping Marnie and Daisy’s legacies going, campaigning for awareness and a change in the currently opting-in system (something I’ve talked about before), and not letting their babies’ lives be in vain. Marnie’s parents were even able to donate some of her heart valves after she died; they managed to give hope to other families when their own had been shattered. Their strength is simply inspiring, and their girls will never be forgotten.
While we will never, ever forget these beautiful girls, it’s important to spread a message of hope this week for them. To use their legacies to focus us on what we can do, what we can change – and what a positive story organ donation can be, too. Just as Marnie and Daisy’s wonderful parents are doing, many of my liver family are also campaigning and spreading awareness this week. These children are the lucky ones whose organs came in time, even though some of them had agonisingly long waits – Conor waited over two years. These families have been kept together through the strength, bravery and kindness of their donor heroes; mostly strangers but some living donors (like Hugo’s superhero daddy). They’ve been able to reach milestones that they, at one stage, couldn’t believe would happen – first birthdays, first days at nursery or school, passing driving tests. I’m blown away whenever I see how well these kids are doing, especially those we knew closely at King’s – to see them looking so amazing now just puts the biggest smile on my face, and I’m so proud and privileged to know each and every one of these families. Most of these kids are here and living their lives on behalf of their angel donor, and all of them carry a truly special message – that organ donation works, and is so, so worthwhile.
We count ourselves lucky every single day that Hugo got his liver in time and that he is still doing very, very well (of course, touching wood). His clinic appointment at King’s back in July was perfect; the email from his doctor the following week simply said “bloods all good – see you in six months”. It still makes my head spin, really – I don’t think that feeling will ever leave me. At eight months old the chances of him reaching his first birthday were getting narrower by the day (after transplant, we were told he probably only had a couple of weeks left), and now he’s speeding towards his third birthday. His life will never be a straightforward one – he’ll always be under treatment for the transplant with regular bloods (the next set is today, gulp) and daily medication. But he is clever, cheeky and funny, strong-willed, independent and full of wonder. And above all, he is here. He has so much fight in him, and is so full of life and love (mostly for Thomas, obvs), and that is all thanks to the miracle of organ donation. It could have been so different, and I’ll never stop being grateful that it wasn’t that way for Hugo.
That’s what this week is about. Please, help us make a difference. Don’t let the world lose another Daisy or Marnie. Sign up to be an organ donor. Shout LOUD about it. Make it known to anyone that will listen – share the shit out of it on whatever social media you have. Have the conversation that could give one more person the chance to live, that could keep one more family together.
Let’s change the stats.
Watch this video from the 2017 Organ Donation Week campaign here: