Gratitude is the start of a journey…

A small Aladdin’s Cave, the Children’s Bookshop in Lindley, Huddersfield. Two sisters chose their next books and then continued their enjoyment of the shop, the company of stories, colours and adventures.

Eventually, it was time to go. Lucia was kneeling on the floor, a few pages into another book that had nodded to her as she scanned along the shelves. A story of a girl in South Africa, and a white giraffe. “Do you want to swap, and take that book instead?” She thought for a moment. “No, it’s OK. Next time.” No need to write down the information, the book was clearly stored in her mind.

A few days later and a couple of hours drive down the road we stopped in a village in search of lunch and a cuppa. A pie shop supplied the first. A second-hand book sale in a village hall supplied the second. Tea swallowed, we wandered around the tables of books. There it was again. The White Giraffe, by Lauren St John. Excellent condition. As though it was waiting for us, so it came with us.

It came on holiday to Spain. Lucia started reading it in the back of the hired car. The car that broke down. Hours later, and only after driving away from Granada airport in a replacement car, we discovered The White Giraffe was not with us. It must have stayed in the pouch behind the passenger seat in the car we left behind.

A few months later and eight-year-old Lucia was in Birmingham Children’s Hospital, recovering from her first liver transplant. Lucia wrote a short leaflet of dos and don’ts in caring for patients in recovery. “Don’t – keep telling me how good I’m looking when I don’t feel like it.” “Do – tell me stories, or read to me…” We did. We finished a few short books that were in Lucia’s bag when she was admitted in a hurry, the week before. They were hard going. We all thought so. But we’d started so we’d finish, making them more tolerable with a variety of silly accents, not sticking too closely to the words on the page and inventing our own alternative dialogue for the characters as we went along.

Eventually, they were done. I ran from the hospital to one of the city’s bookshops, the last customer squeezed in before closing time. I knew what I was looking for and, not finding it on the shelf, I asked an assistant. She looked doubtful but went to look. When all the other customers had gone, the security man looking between me and his watch, she returned. “You’re in luck. It wasn’t where it should have been. Must have been re-shelved by mistake. Bit dusty from the storeroom but brand new.” Half an hour later, for the third time, Lucia started The White Giraffe. This time, we read it aloud to her, good company for her hospital recovery.

A year later, Lucia was on the transplant list again. We read the second book in the series, Dolphin Song, as we waited to see if a call would come.

As we finished reading that story, another was beginning.
“I’d like to thank the author for writing those books,” Lucia said.” They’re good stories, and they’ve been great for me in hospital.”
“Well, you can. Why don’t you?”
“Really? How can you do that?”
“We can find the address for the publishers, and they’ll pass it on.”

So, Lucia wrote to Lauren St John. Not for a response, just to say thank you. But a gracious response did come, a note, a poster of Dolphin Song, a bookmark and another book, The Last Leopard. In time to take into the Children’s Hospital, hoping we could read it to Lucia if her second transplant went well.

We read two more books that time. Lucia enjoyed them all, every word of them. Stories that nurtured her kindness, encouraged her empathy, kindled her curiosity, strengthened her resolve as she followed the adventures of strong young women, each inspiring her love of skilful writing and ambition to try it for herself.

So, last year, as Lucia began to come round from that fourth transplant, one more book by Lauren St John, Snow Angel. Whatever the difference between the book’s target ages and her own, Lucia wanted to hear the story. In its pages, a girl looks for three magical moments each day to keep her going against the odds. Three things to be grateful for. We carried that on in the hospital whenever we could.

After Snow Angel, Lucia promised to write to Lauren St John again. We fulfilled her wish. Then, less than a year after Lucia died, a gracious request came back from Lauren, to dedicate her new book to Lucia. An invitation to us to add a note about Lucia, to include something of her light and energy in the last pages of Lauren’s book.

Wave Riders by Lauren St John. art by Rachael Dean
Wave Riders by Lauren St John, art by Rachael Dean

Wave Riders was published in June this year. Orphaned twins, sailing in the Caribbean, lose their guardian to a crashing wave and find themselves soaked in a mystery about their own identity. An engrossing adventure. Lucia would have listened intently to every word, eyes suddenly widening at some images that would have caught us all by surprise.

The book is on its own journey now, out there in a sea of readers. And, thanks to a gathering of gratitude, Wave Riders carries another story, a precious passenger and her invitation to us all to Live Loudly, Donate Proudly.

Gratitude, the time taken to turn round and say thank you, became such an essence of Lucia. Her gratitude to donors above all.
Gratitude for life and the chances she had been given.
Gratitude for the kindness of others, to Lucia, to her family, and everywhere she saw it in others.
Gratitude for the people in the hospitals who gave her their skill and attention…
Gratitude for the Transplant Games and the incredible opportunities to laugh and compete and train and dance and sing and feel the strength of that outstanding family.
Gratitude for friends, for school, for…the beach.
Gratitude for the unnamed goodness that she sensed in her life and encouraged in the lives of those around her.
And giving voice, action, to her gratitude.

That’s what started Live Loudly Donate Proudly. It’s not really a campaign. It’s a “thank you” that is “paid forward” because it can never be paid in full.
And just like that innocent wish as we finished reading the last words of Dolphin Song – “I’d like to say thank you”, you can never know where a simple act of kindness from a grateful heart can lead…

Conversation between friends…


Sisters by the beachAlice and Lucia

This day last year we shared a most private and intimate space. The four of us. Two sisters who had laughed, played, chatted and danced their way through almost, almost, twenty-one years of closeness together. Their Mummy and Daddy, privileged to be their hosts and proud of them both beyond compare. And the company of a caring nurse whose threading of kindness through our months in LITU made her a friend, much loved by Lucia.

One year on from Lucia’s death in King’s College Hospital, London, back by the beach Lucia loved so much, this day will again be quiet, intimate. Large gatherings are still pandemic prohibited, and we wouldn’t attempt such a thing until Lucia’s Transplant Games family can travel and gather in safety and confidence.

So, the day is for small things. Moments and symbols. Seeds. Planting, perhaps. Plant a thought. Plant a conversation.  It’s what Lucia was doing when she set up Live Loudly Donate Proudly. Planting seeds.

And there is plenty of fruit already. Some rich and ripe and harvested. One man was excited enough to let Lucia know that, thanks to her planting, he had become a bone marrow donor and saved the life of a girl he didn’t know. Others who have had the conversations at their kitchen table have, in the face of sudden family tragedy, graciously upheld decisions made and from their own pain given life and hope to another, to others, through the miracles of transplantation.

Plant a conversation, plant a life.

Many have signed the organ donor register and, more importantly, talked about their decision with family. Some have been encouraged to add their voices, often in creative ways, to encourage conversations to start in other places.
Live Loudly Donate Proudly has become a voice amongst many others online, on Facebook, Twitter and Instagram. It has been on the pages of the newspapers, on the radio and the television, local and national.

Lucia, often to her astonishment and always with eyes wide in joy and delight, has been called forward as winner of awards for sport, for campaigning, and the youngest name on that New Year’s Honours list in 2018.
All through planting conversations. A few words, a speech, an article, a blog, an interview, the joy-filled gift of turning intense personal struggle into a resource, a lifeline for others.

In 2018, Lucia was invited by the BBC to be recorded for Radio 4’s Listening Project. Invited to create a conversation with a friend on living with organ transplant. Lucia invited Erica Ferguson, Northern Ireland Transplant Association, to talk with her. The two of them chatted for an hour or more. A beautiful conversation filled with wonder, joy, amazement at their good fortune, their survival, and the sense of responsibility that grew with them. Everyday gratitude to donors and profound love for life, for the feeling of rain on skin, wind in hair, breath in lungs. The chance to dance.

A few minutes clip was broadcast as the Listening Project for 10 Aug 2018. The full conversation is archived in the British Library and copyrighted to the BBC. On this day when we would most like to hear Lucia’s voice bouncing around us again, we offer you this link to her conversation with Erica. Listening Project: Lucia and Erica  Listen to it, all in one go, or in instalments, on your own, through headphones as you walk on a beach or with family and friends as you sit with a candle, or a cake… However you listen, may it be another gift from Lucia to you. A bit more of her commitment to Live Loudly Donate Proudly, an inspiration to plant another conversation, an invitation to life and the opportunity to bring this precious gift of life to someone else.

(And thank you, Lucia. Because we know you as we do, we will never be surprised to find your light and energy beside us, and on the road ahead…)

Strengthening the team…

Lucia started Live Loudly Donate Proudly from her passion for promoting organ donation. It was matched by her deep belief in the capacity of children and young people to tackle big issues and be creative agents for change.  Lucia’s commitment to see organ donation awareness included in the Northern Ireland National Curriculum in open and imaginative ways found good soil and has good gardeners to keep it growing.  We are delighted to share this blog from Catherine McKeown, recently appointed as Organ Donation Promotion Manager for N Ireland, and welcome Catherine’s energy and skills as we work towards the Curriculum, and much, much more…   Read More »

International Women’s Day

The “Live Loudly” of this campaign is, primarily, to encourage us to be loud and clear about our wishes for organ donation.  Then it is an encouragement to any who have had a transplant to show themselves, donor families and everyone else, that life after a transplant can be lived to the full.   For Lucia, Live Loudly also became a personal call to raise her voice as a young person, a young woman, and to inspire others to raise their own.  International Women’s Day was a day Lucia wouldn’t miss.

IWD_01 Read More »

Time is precious…

Time is precious. We won’t ask for much of it in this blog.

If you live in Northern Ireland, the Department of Health would like to hear your views on a possible change to the organ donor register, from the current opt-in system to a proposed opt-out system. They’re asking about:

  • Your current intentions or decisions about donating your organs/tissue after you die;
  • Whether you have shared this decision with your loved ones;
  • Whether a move to a statutory opt-out system would change your decision;
  • The groups of people who should be exempt from the proposed changes;
  • The role that your family and loved ones should play;
  • The scenarios in which deemed consent should not be applied, e.g. donation for research purposes, or for novel and rare types of transplants; and,
  • How we should engage with the public to raise public awareness of the proposed changes in the law, and the focus for future communications.

Sound like a lot?  Not really.  It’s mostly multiple choice questions that can be done online in a few minutes.  It could even be a short lockdown activity for a family.  Here’s the link for a look – Consultation on organ donation  Just scroll down to respond online.

The few minutes you give to it could, one day, make a difference between a transplant or no transplant to someone who is waiting, waiting, waiting as time slips away.   Could you squeeze in a few minutes to have a look before the consultation closes next Friday 19th February?

Whether you live in Northern Ireland or not, a few minutes of conversation with family and friends, making sure we all know and understand each other’s wishes  on organ donation is time well spent.   Your time is precious.  Your decision could give someone else some precious time.  A whole new lifetime.


On the first day after Christmas…


Twelve days of Christmas, all done and dusted. And on the thirteenth day…The visible, decorative bits of it are finding their way back into boxes and bags and that beautiful tree that was such good company in the corner of the room will sit outside for a while, maybe somewhere for the birds to perch and go about their business.   The music, the adverts and programmes on TV, the films, the chatter, they’re all changing again.  It’s back to the more usual, the day-to-day, the ordinary.

Not so in this world of transplants. It doesn’t all stop when we walk out of hospital, or close the blog. It’s not like Christmas.  It doesn’t just go back in the box, off the agenda until next year, until an anniversary or a special reminder.  A transplant is rarely a simple, one-off cure. There are check ups, medications, maintenance procedures – sometimes simple and sometimes more serious and, as we all know, sometimes there are repeat performances.  That’s why all those people we really connect with along the way become so important to us all.  Even when we go back home.

Many of these Christmas blogs have included glimpses of international travel through the Transplant Games. It sounds simple, but it doesn’t come free with a transplant. There’s a lot of fundraising for individuals and families.  A lot of grant applications and letters to charities to help subsidise some of the teams. A lot of organising and communicating back and forth between team managers, committees, and event organisers.  Lots of work registering all those participants and spectators and sorting accommodation and socials and kit before we ever get to the Games venue for the year. And somewhere in the middle of that there are a few very busy people, generously making it all happen in their spare time. Each Transplant team is different, but the Birmingham Children’s Hospital team managers are mostly from the hospital staff – nutritionists, physios and a specialist nurse.

They are some of the people who take the donors’ gifts and make them work, beyond the surgeons.  They help reconnect recipients with their ordinary, now extraordinary lives.  At the Games we get to see each other, to talk beyond the ward, to gossip about anything and everything, to dress up for Gala dinners and dress down for breakfast, to laugh and dance, tell silly jokes and lark about.  To live a kind of lasting thank you. In between the Games, in the routine clinic appointments, they have a bit of time to catch up on things that matter for their patients beyond the medical. It’s not always the incredible and amazing things some of their former patients go on to do that thrills them most – but the deceptively ordinary stories that show how incredible and amazing life really is when we look at it again.  To round off this series, these words are from Lindsay Hogg, Transplant Specialist Nurse and a manager for the BCH team.

“When my patients got their transplants, their donors gave to me…
– first days at school
– walks on the beach
– holidays
– football matches
– nativity plays
– musical concerts
– singing
– pets
And I LOVE seeing the photos and hearing all about life post transplant in clinic.”  

The miracle of transplants is not just in the operating theatre.  It’s every day.  It’s a chance to see the magic in all that stuff we could just take for granted.  A chance to value those we have around us and any way we have of staying close. A chance to, you know, have a conversation for the sake of someone else…

On the twelfth day of Christmas…

xmas 12Eleven days of Christmas. Eleven days with thoughts from friends whose lives have been transformed by the gift from each organ donor and their family. (Thank you to everyone who sent us your words.) So, on the twelfth day of Christmas, one more bright light against a darker sky.

“When I received my transplant, my donor gave to me…
A longer life for me to be happy
Two Arsenal cup wins
Three playstations
Four Transplant Games
Five major ops, (you got to be kidding me……!)
Six GCSE’s
Seven ‘Fast and Furious’ films
Eight Croyde holidays
Nine Games medals
Ten more years with my dad, mum and brother
Eleven and many more friends who helped fundamentally
Twelve and more doctors, nurses, who cared for me.”

That’s from Ian, Luke Biggs’s dad, who knows well what Luke might have said (though Luke may still have surprised us all with something else!).
Ah, Luke. How much there is to say about Luke.
With Luke we all knew we were on to a good thing. A good friend. The very best sort of company to have when you are young, and in hospital, or recovering from a major operation, or celebrating together later with the team at the Transplant Games.
We just wanted it to last forever.
It’s not how it went. Luke had already had two transplants but needed a third, more complex still. He waited. His mum, dad and brother waited. We all waited, and in the waiting time we spent together we got to love each other more.

There was no last minute rescue. Sometimes all the love in the world isn’t enough to fix things.

Because of Luke’s first donors, those few short years touched so many of us. Touched? Collided with and changed us, in the kindest ways. Luke’s donors gave us the chance to see how a life, an ordinary life, even a short life, is really so very, very extraordinary. What greater gift…

Thanks for reading these Christmas blogs about the gifts of organ donors and their families. Have the conversation about organ donation and help others do the same. It might be ordinary but it could make an extraordinary difference for so many who are hoping for better times to come. May the New Year surprise you with kindness.

On the eleventh day of Christmas…

xmas 11

If we could peep into the text messages, Facebook pages, WhatsApp, emails, and the cards and letters on tables and mantelpieces belonging to people who need, or have had, transplants, we would catch a glimpse of how many people can be waiting with us for good news, how many are cheering us all on, saying prayers, lighting candles, speaking our names with care and thought. Even when the world of family and friends outside is very small, in the medical teams and hospital staff on the wards some become new family as the cards on hospital corridor walls can show.

For those who go to the Transplant Games it all becomes much more visible.  At the opening ceremony, the City Hall, Cathedral, City Square, stadium, or whatever venue was chosen, fills up with mums, dads, siblings, sons, daughters, other relatives and friends.  The transplant athletes and participants are the main focus, of course, but watching with excitement and tears of joy are those of us who in other times and places listened with tears of a different kind to hard diagnoses, waited for the call from a transplant coordinator, sat by hospital beds, inched our way along with our loved one’s recovery, and can now scarcely believe the better place we have all reached together.  Being there together with others who know the stories inside out is like breathing big gulps of fresh air.

And it’s not all about the competition and the medals either, good though they can be as signs of achievement.  Everyone is already a winner just by being there. “You made it this far, you’re already a star…”  In the eyes and hearts of those in the stadium, the opening ceremony with the entry of the competing teams from their various hospitals is already a parade of champions, whatever happens next.

And next is the small parade of donor families and live donors.  If eyes were dry before this it can all change as we are knocked over by our gratitude to those in front of us, and the countless others we will never see, without whom all these stories would have been utterly different.

So, pause, take a minute to get inside these next few words and walk a while in the shoes of those who sent them…

“When my daughter received her transplant the donor gave to me…a new life for Maisie, pain free”
(Jenny, Maisie’s mum, Day 2)

When my mum received her transplant her donor gave to me…the very best present under the Christmas tree! (Ann’s daughter, Day 8)

“Our son’s donor gave to us…a chance at being a Mummy and Daddy.”  (Lucy and Ben, Charlie’s mum and dad, Day 9)

“When Harry received his transplants…it gave us a chance to live as a family outside of hospital wards.”  (Clare and Simon, Harry’s mum and dad, Day 10)

“When my son Blair received his kidney transplant his donor gave to him…the wonderful opportunity to visit New York”  (Joyce, sharing her son’s excitement and adventure.)

“When I received my transplant my donor gave to me…I could be the mom I wanted to be.”
(A mom, with a beautiful chance to be just that…)

Somebody out there must have watched “It’s a Wonderful Life” again over the last couple of weeks.  (Confession – we did.)  Wherever it might be on your priority list for Christmas movie viewing, it is an imaginative reminder of the way our lives are inter-connected and how what happens to one of us can affect so many others in ways we could probably never foresee. Ripples and ponds and spheres of influence and all that.

Organ donors make a life-transforming difference to many, many more people than the recipient.  There are about 50,000 people living today in the UK thanks to organ donors.  And there are over 6,000 people on the UK transplant waiting lists. Add to that their families, friends and spheres of influence and none of us are likely to be far from the story, one way or another.  Having that conversation about organ donation could be more personally important than we think.

On the tenth day of Christmas…

xmas 10

Five years ago, just before his second transplant, Harry (nearly five years old then) and Clare, his mum, were interviewed on Breakfast TV. Harry laughed his way through the piece and then, still laughing, ran off round the studio and kept staff busy trying to catch him. The presenters quickly moved on to a report about broadband but it was too late. Harry won the day and captured the hearts of many, a persuasive invitation to have the conversation about organ donation.  See for yourself – just click this link .

In Harry’s case the conversation – many of them – had been about his dad, Simon, becoming a living donor. The liver is a miraculous organ and has the capacity to regenerate. Simon was able to donate part of his liver in the Queen Elizabeth Hospital, Birmingham, from where it was then taken a couple of miles down the road to the Birmingham Children’s Hospital (BCH) where it became the life transforming gift for his son. Clare’s attention was stretched between Simon and Harry as they recovered, as well as with Harry’s younger brother, Sam.

Now, if there’s a call out to support an event for the hospital, or to raise a voice for organ donation, join a debate, make the case or celebrate the new life it can all bring for others, it’s a family commitment to respond and they’re one of the first to the line. Clare is now one of the BCH Governors, and a champion for its work.

Harry was soon “super better” and can now “run really fast”.  Harry and Simon both participate in the Transplant Games, Harry as a transplant athlete pouring his energy into a variety of sports alongside his young peers and Simon competing with other “live donors” in the swimming pool.  It’s hard to decide which one of the two, dad or son, gets the loudest cheers and longest applause.  It’s more than medals and the Games, of course, as Harry’s words make clear.

“When I received my transplant my donor gave to me… the chance to go to school, make friends, become a Cub Scout and play Minecraft”.

And more time to laugh. And make everybody else feel like joining in. In this story there’s a donor who can be thanked directly, though there is probably not much that could be better thanks than hearing Harry’s joy-filled laughter and having the rest of the family join in. And that’s a great reason for having these conversations.

On the ninth day of Christmas…

xmas 9

Some people just shine. They can’t help it.

There’s a whole primary school worth of children at the annual Transplant Games. They’re everywhere. They’re not quiet either, not usually. Certainly not at the social events, or the final night Gala Dinner and the Award ceremony. OK, some might be a bit louder than others. But when they do stand out we know they’re shouting for their team, for everybody at the Games, for their families and their friends, and just because they can.  You need to see it. And hear it.

And age doesn’t matter. You don’t need to work on arranging older buddies or mentors for them. They gravitate. They recognise love when they receive it. They see fun when it’s around them and they want to share in it, no matter what ages it might involve.

Today’s star from this bright constellation is a young man who had a liver transplant when he was just three months old.  He’s 10 now and has been coming to the Transplant Games for, ooh, years!  He’s a veteran with seven Games under his belt.  He’s had a crack at most things the youngest team members do – obstacle races, ball throw, long jump, 25 metre dash (mums and dads waving at the far end to remind them where they are supposed to be heading), now into longer and more serious race lengths. He’s a “taking part person”, a determined and enthusiastic competitor who just loves to compete (and an occasional medal is always a good thing to carry home and take into school with pride).

But if you could win medals on the dance floor for sheer energy and “get in there and do it-ness” he’d have a heavy bag to carry home.  He was caught on video a few years ago when, after the Dinner and the Awards, a circle of all ages from his team started singing a Games theme tune, borrowed from Freddie Mercury – “We are the Champions”.  His enthusiasm, full “heart and soul stuff” matched anyone else in the circle.  He danced with his arm round the waist of one of the many young people he’s so fond of – well, reaching up he could just about make waist height.  As the song reached it’s climax he clung round that waist with both arms and a face so full of excitement and belonging you could light rooms with it.  Charlie Doughty, whose words should shout off the page –

“When I received my transplant my donor gave to me…a zest for life and a mission to succeed!” 

And that is a gift to his mum and dad too. What’s better than seeing your children charging about on top of the world, even if they’re not quite big enough yet to climb up onto the top of it on their own.  (But more about mums and dads another day.)