We have a rose in our yard called ‘Lichtkönigin Lucia’, Lucia Queen of Light.  It was given to us by good friends shortly after Lucia died.  This year, the leaves are verdant green, the blooms full, abundant, bright, and fragrant. The rose carries such meaning it is almost company.

We sent photos to the family who gave it to us. “The beautiful Queen of Light.  She is looking absolutely radiant; how could it be anything other!”  Shining appropriately, as Lucia would be.

It’s different now, of course.  Now we have to see Lucia’s radiant, vibrant energy in other ways.  Sometimes in the effect Lucia had, and still has, on others.

• In April last year, the British Liver Trust and Children’s Liver Disease Foundation merged to combine their expertise and passion and become a stronger, more effective support caring for children and adults with liver conditions.  Lucia championed Children’s Liver Disease Foundation, fundraising, speaking, participating in events. This year, two of us (Lucia’s parents) were honoured to follow her footsteps, becoming ambassadors for the merged charity.

• In the Botanic Gardens, Belfast, is a tribute to a young man from Galway, Éamonn Goggin, who died in a tragic accident in July 2006.  As was his wish, Éamonn’s parents agreed to donate his organs, saving the lives of others.  The Circle of Life memorial garden was created in Salthill, Galway, and replicas of its central sculpture donated to other gardens in Ireland, the UK, and other countries.  A five-foot stone candle was gifted to Belfast.  Wrapped around with beds of flowers, in Botanic Gardens, it invites quiet reflection, gratitude, inspiration.  In March this year, Live Loudly Donate Proudly was invited to speak at the rededication of this space, Lucia’s story unwrapped again in gratitude for donors, inviting open conversations about organ donation.

• At the end of April, over 150 young people gathered on a sports campus in Ballycastle with helmets and sticks. Camogie is a fast-paced team sport, played by women.  It is a uniquely Irish tradition, and Lucia’s part of the world creates champions in its schools.  For the fourth year in a row, eight regional schools competed again for the Lucia Quinney Mee Memorial Cup, and the Live Loudly Donate Proudly Shield.  Organised by a teacher and her team from Lucia’s old school, it has proved to be a fun and engaging way to raise awareness about organ donation and encourage young people to make a difference.  (More detail in a previous blog – Transplants, a cup, a shield…and camogie and photos from this year on our Facebook page.)

• Last year, lesson plans and material for school assemblies were successfully tested in primary schools across Northern Ireland.  Similar trials with materials for secondary schools went to 24 NI schools.  So far, the materials have been received very positively by all.  They are expected to be launched for all schools in the new school year, in time for Organ Donation Awareness Week.  It’s a giant step closer to organ donation education being part of Northern Ireland’s National Curriculum, accurate information given to all students, countering myths and misinformation, enabling young people to make their own informed decisions, opening conversations with others, and making a difference.  This was at the heart of Lucia’s aim in creating the Live Loudly Donate Proudly campaign, and it is exciting to see this progress.

• There is art in this shining energy, too.  Two local artists caught us by surpise, generously painting the Live Loudly Donate Proudly logo beneath an image of a lighthouse, into a mural on Rathlin Island.  Lucia’s campaign, a light shining out of her own darkness for the safety of others.

•  And we have just heard of another gentle, generous gift, that may be released in October.  But that’s another story, for another time…

Something in it all could make a difference for someone.  It might help another family hold on to their loved one for longer.  It may help others find some flicker of light, some hope, some deep pride in the thought that their loved one has made life better, possible, for another.

Yet for all that, it’s not enough for us.  Lucia was much more than her medical condition, her transplants, her campaigning. After she finished her talks, her presentations, her hospital visits and operations – all but one – she came home, the youngest and much cherished member of our family of four.  She was just our Lucia again, at home.

So of course it’s not enough.  No fair trade.  But it is “a something.”

And sometimes it catches the light.  It shines.  A sweet fragrance on a breeze…

On 24^th November 2008, the anniversary of her first liver transplant, Lucia was added to the active transplant waiting list again.  In January 2009, tired, uncomfortable, and skin yellowed by jaundice, Lucia watched the television coverage, excited and inspired by a presidential inauguration on the other side of the Atlantic.  One where skin colour of a very different kind was a headline focus.

Barack Obama was sworn into office as the USA’s first African American President.  Amid all the other hopes that day carried was the hope that this election choice would hasten a day where skin colour would become less of an excuse for negativity and prejudice.

There was an African American poet in the ceremony then, a poet with a question.  “…What if the mightiest word is love?  Love beyond marital, filial, national, love that casts a widening pool of light…?” (‘Praise song for the day.’)

On the same spot, twelve years later, the 22-year-old African American poet, Amanda Gorman, impressed millions.  “…there is always light if only we’re brave enough to see it, if only we’re brave enough to be it.” (‘The hill we climb.’)

We looked for her videos afterwards, more poetry from the same pen.   We knew Lucia would have found strength in her words, her courage.  A young woman with a powerful voice making a difference, turning her own struggle and that of countless others into resources to inspire, to awaken, to rekindle hope.

Obama’s inauguration ceremony over, as British TV prepared to tell more of the story of this man who was now president, the phone rang in our house.  Within an hour and a half all four of our family were on a small plane from Belfast to Birmingham with the hope of a second lifesaving liver transplant for Lucia.

A liver transplant in the USA can cost hundreds of thousands of dollars.  It’s not something many of us need to think about in the UK.  After the country celebrated the end of the second World War, the majority here made a choice for a new government, determined not to return to the way things had been before.   The National Health Service was born, with a commitment to make healthcare free at the point of need.

Again and again, we had reason upon reason to be grateful for the care, skill, medication, even flights, family accommodation, and so much more.  And grateful that, when it mattered most, we never needed to consider how much it would cost.  That is done by others elsewhere.  Given to us in our need, available for us all through the NHS whoever we are.  Able to contribute or not.  As it should be.  A gift, like the hope that phone call brought.  Someone who may only ever be for us a young man whose family, somewhere in an ITU conversation with a Specialist Nurse for Organ Donation, generously, graciously, gave permission for organ donation.  The gift of that young man’s liver immediately saved the lives of two people, one of whom was Lucia, and hope was given the fresh rush it needed.

It did, of course, for us put that other celebration of hope in the USA into the shade for a time.  Nor would any of it have been a priority for the family of our donor.

But there was hope over there.  Poets gave voice to hope that was deeper and longer lasting than any presidency, any political moment.

Like the dream that outlived its preacher, celebrated yesterday on Martin Luther King’s Day, that still rings clear against all odds.  Dreams like these outlive their carriers and look for others to give them voice.

Years after that 2nd transplant, Lucia was one of two Pramerica ‘Spirit of Community’ All Ireland Youth Volunteers of the Year, alongside another young woman, Emily Duffy.  Lucia chosen for her campaigning for organ donation awareness, and Emily the creator of an innovative sleeping bag for homeless people and refugees.

They were both invited to the equivalent award ceremony in the USA.  During the visit Lucia was excited to stand on the spot where Martin Luther King had shared his dream.  She chuckled at the thought that the actual highlight of the trip for our transplant swimming medal winner was meeting another swimmer who had also won a few medals, the Olympian Michael Phelps, and her chance to tell him about the Transplant Games and leave him with a Live Loudly Donate Proudly card.

Lucia, Michael Phelps and Emily

A few months later, Lucia was invited to speak at a Methodist residential conference.  The theme was “I have a dream…” She was asked about hers.

“…initially I just thought, well, my dream is for everybody to be an organ donor.  So, that is still one of my dreams. 

But then I thought about it a bit more and what an organ donor really is, to me, is somebody who has turned quite a negative, sad, situation into something that’s so positive and has benefited so many lives afterwards, and I think my dream, I would say, is to turn negative situations, or what’s construed as a negative situation, and to find the positive in it, so to be in that dark room and to find the little flame of a candle and let that guide you.

Through everything that I’ve been through there are people that will say how do you stay so positive; how do you keep going?  I think there are obviously people that are naturally positive, but mostly it’s a choice, it’s a choice to be thinking forward and not looking backward, and it’s a choice for me every day to try and find the positive things in little situations that will help me just to make the most of my time here.  We never know what’s going to happen to us, and I think by just trying to find little glimpses of hope, or positivity in anything that you come across in life, would be my dream, my message, to try and find the little flame in what might be a very dark room.”

Twelfth day of Christmas. (Far too soon…)

Music can be a vehicle for emotions when words fail, answers run out and feelings run deep and linked to the personal stories in these 12 days of blogs, it’s a vehicle with a powerful engine.  Listening to these 44 contributions, over two and a half hours of music, and turning them round for each day has, for us, been an experience of visiting, in some cases revisiting, some of their personal highs and lows with these friends.  They have each given generously not just a few song suggestions but honest and candid glimpses into some quite intimate experiences.  A brave gift, to be received gently.  To quote the poet…”Tread softly, because you tread on my dreams.” (WB Yeats.)  So, to all our contributors, in the words of Abba (nearly), “We say thank you for the music, for giving it to us!”  Thank you.

Two songs in particular have become popular anthems for occasions when many of the transplant family are together in one place – and that’s usually at the end of the Transplant Games – sung by all with vigour and emotion.  We started with an instrumental version of this first classic, another version made it onto an NHS Charity single, many others have made it their own, and we’ll add the song again because, well, because we hope it’s true…You’ll never walk alone, by Gerry and the Pacemakers.

And we’ll give the last song choice to Sara, a paediatric dietitian and, until last year, much-loved Team Manager for the Birmingham Children’s Transplant Team.  It’s been mentioned by more than a few, it’s in the heart of the Birmingham team, but the sentiments are echoed with the same conviction, poignancy and joyfulness by countless others who know the trials and rewards of transplants.

“I read the request for music with interest…and before I could finish the thread, I could hear the team belting out We are the champions, by Queen, loud and proud in my head. Seeing them all, arms draped over each other in that circle of champions ❤️.  Each one of the young people, parents, family members & health care professionals really knowing what it took to become ‘champions of the world’.  How hard the fight had been and continued to be.  And each of them singing at the top of their voice – for themselves, their families and their donors…ALL champions!!!

Thanks for being with us for these blogs, if you have.  Thanks for the ‘likes’ and hearts, reposts and whatevers on social media.  Do be a champion and sign up, it really takes less time than listening to any of these songs and may have an affect that lasts a whole new lifetime.  Most importantly, please make sure your family know.  And, if you’ve done all that already, play the music and start another conversation with someone else. Any stone in this pool creates ripples and makes a difference.

May the New Year be kind and gentle with you and yours…

Sara (centre), with Lindsay (left) and Jemma (right) 

Eleventh day of Christmas.  Charlotte said something so simple and poignant in her contribution to the playlist yesterday, with her choice of Hold on we’re going home, by Drake.  “I used to listen to it in hospital and it made me feel so lucky that I was going to get better and go home, as I knew not everyone would.”

It’s a reality in the transplant world, a reason why renewed life and all the varied pieces that make up its mosaic are even more likely to be held closer and treasured.

NHS Blood and Transplant figures for the period April 2023-24 record 4,570 transplants.  3,712 were transplants from 1,510 deceased donors.  

In the same period, over 415 people died while waiting on the transplant list.

When a person’s decision to be an organ donor is known, 9 out of 10 families will say yes to donation.  If they are unaware of their loved one’s decision on organ donation that consent falls to about 6 out of 10 families.

That’s some of the ‘why’ of Live Loudly Donate Proudly.  To encourage conversations, soon, now, rather than ‘tomorrow’, potentially reducing the waiting list, giving someone else a better chance of a transplant, and the best opportunity they can have to go home.

Behind those statistics are people: each donor, each person on the waiting list who didn’t get to go home, loved and honoured by someone.

And not all transplants are free from complications.  Sometimes, as a friend said recently, however strong you are, none of us is stronger than the universe.  Some of our transplant recipients live lives that are all too short, however brightly they shine.  Alongside those donors whose lives have saved others, the transplant family carries many other names that are equally treasured.  Those with whom we have laughed, cried, danced and ached in hope.  Those who didn’t come home.

In September 2018, Lucia’s blog was a moving tribute to her dear friend, Luke Biggs.  Today’s playlist contribution is from Luke’s family, ‘the Biggsies’.  With their characteristic humour, fun, and honesty.

Over to you, Biggsies…

“Mariah Carey’s, gastro related Christmas song, All I want for Christmas is poo – sorry – you. Particularly when in hospital over several different Christmases after a gastro related procedure or two. ‘We’re waiting for bowel movement as a sign of success.’ Hence all we want for Christmas is poo.

Wiz Khalifa, See you again, is from Fast and Furious 7. A franchise of films Luke really enjoyed, but 7 was the last one of the set Luke saw. He went into hospital just one month after seeing it in the May of 2015 to never come home. Certainly now a tear jerker for Luke.

Fat Boy Slim, Right here right now, relating to you gotta just get on with it, no one else will do it for you, and Elvis, The wonder of you were both songs The Arsenal would come out to before football matches which Luke enjoyed being at. They were also music played at Luke’s funeral. He entered the church to Right here, right now, receiving a standing ovation. Not something you’d expect to see in a church. The wonder of you was the piece of music he left the church to, but also, just how the lyrics relate to our children and how amazing they are, all of them, always.

One last one. Happiness, by Kasabian, one of Luke’s favourite groups from his brother Adam’s playlist he chose for Luke to listen to as we comforted him in his last hours in this world.”

The Biggsies

Tenth day of Christmas, and today’s songs come from Charlotte. 

How these friends managed to narrow their songs down to a few contributions for these blogs, even with the overlapping choices that underline their shared experiences so well, is hard to imagine.  Has to be a tough job.  When they are all together at the Transplant Games, or wherever, music and dancing are never far away.  Nor is laughter.  They have enough in common already in their stories of health and hospitals and medications and procedures, any opportunity to share the joy of being together is a gift to be relished.  It’s their eloquent tribute to their donors and donor families, to their own families, their friends, and to the gift of life.  No surprise then that some of the songs are repeated.  And for some, when there’s an opportunity to sit together in the lap of a koala bear, it just has to be taken…(see below!).

Thank you, Charlotte, for these songs, and the places they take you…

“My Love, by Westlife – I love Westlife and we used to listen to this song when I was in hospital and was apart from my family, reminding us we would all be back together one day.

You’ll never walk alone and We are the champions are both Transplant Games favourites, probably been given by everyone! (So true, Charlotte!  More of this to come on day 12…)  They bring us together and remind us we have all been through our own journeys that people in the ‘outside world’ can’t always relate to.

Superheroes, by The Script and The Climb by Miley Cyrus.  These two just make you think about how far you’ve come and everything you’ve been through to get there.

Hold on we’re going home, by Drake.  This one might be a bit of a random one, but I used to listen to it in hospital and it made me feel so lucky that I was going to get better and go home, as I knew not everyone would.”

Charlotte (left) with Lucia

There’s no shortage of images in the last song for today, contributed by Jane, the mum of a transplant recipient.  Like Keeleigh, Jane’s son, James, is part of that whirling, dancing, caring group of friends from the Transplant Games, and no stranger to climbing the medal winner podiums.  His climbing also includes many a high peak, including Ben Nevis, Scafell Pike, and Snowdon all within 22hrs 39 minutes.  Just as courageously James shared his transplant story in a blog for Live Loudly Donate Proudly in September 2018.

We often talk of the transplant journey and its hospital adventures and misadventures, as a rollercoaster.  Highs and lows, out of our immediate control, taking us where it goes, like it or not.  Sometimes, some of us begin to dread the mention of the word, with all its connotations.  An attentive listening to Jane’s chosen song, Windmills of your mind, sung by All Angels, offers an echo of the dizzying experience and mental entanglement for those intimately involved in the world of transplants.  Like a snowball down a mountain, or a carnival balloon…a clock whose hands are sweeping…

Jane

Eighth day of Christmas.  Two guests with musical contributions today, Zoe and Alicia.

Our first is Zoe, a friend who seems to muster remarkable reserves of energy to train for competitive table tennis, and win an impressive medal and trophy count while also managing a rigorous renal dialysis regime.  That takes its toll, and more than the medals might suggest.  Zoe helps to raise awareness about chronic kidney disease, and organ donation, through her Instagram and Facebook platforms, “Keeping it renal”.  Have a look – but listen to Zoe’s and Alicia’s contributions before you leave us!

“The first song that comes to mind is The Climb, by Miley Cyrus. It talks about moving forward. ‘There’s always gonna be another mountain, I’m always gonna wanna make it move, always gonna be an uphill battle, sometimes I’m gonna have to lose, ain’t about how fast I get there, ain’t about what’s waiting on the other side…it’s the climb.’

The second song for me is one I connect with my mum donating me my first (kidney) transplant. You make it real, by James Morrison. ‘Everybody’s talking in words I don’t understand, you got to be the only one who knows just who I am. You’re shining in the distance, I hope I can make it through, ’cause the only place that I want to be…is right back home with you.”

Seventh day of Christmas, and another blog from a good friend, Lucy Aur.  Lucy and Lucia met and became friends in Kew Gardens when both had been invited to be Ambassadors for ‘iWill’, a campaign to raise and encourage the voices of young people.  Lucy founded and runs Renegades Foundation, ‘making a noise about silent struggles’.  Check it out on the web link, or Instagram – but try this blog from Lucy first…

“Get up at 5am, start running, run 10k, run a marathon, complete an Iron Man, blend and drink your greens, ten step skin routine morning and night, less carbs, more protein, less phone time, more side hustle, loose weight but gain muscle, clear your room but buy this light up mirror someone with 200k followers told you will change your life, travel but save your money, embrace your youth but settle down soon, cut down and cut out until you’ve burnt yourself out.

In summary, change yourself and punish yourself when you don’t completely change your life by Spring.

To me, traditional resolutions come with feelings of disappointment and guilt. Because they are rigid and stressful and rarely fit in with our work and personal schedules. At the end of the year we look back and berate ourselves for the places we see we’ve failed, instead of accounting for the many many ways we have lived and loved and grown.

A new year is supposed to feel like a celebration. An excitement for all that is too come, all that we will experience that we can’t possibly imagine yet. Usually I write about the struggles of the festive season, grief and anxiety and pressure. And while all those things are still present, this time it feels poignant to put thought into something that can make a positive difference and that is easy to achieve.

I don’t want to start a new year planning all the ways I have to change myself. I don’t want to end a year regretting all the ways I didn’t change myself yet. I don’t want to kid myself into taking up Pilates because it’s the latest trend when I already know that it doesn’t make me feel good.

My value doesn’t change when the clock strikes 12 on December 31st. My wants and needs don’t change on January 1st.

Here is what I do instead.

I don’t change myself; I see it more as adding to who I already am. I don’t have resolutions, I have intentions.

In 2025 I don’t have any plans to improve my 5k time or cut out sugar.

I intend to swim in the sea at Ogmore with my best friend because she said she loves it.

I intend to eat the fruits I haven’t tried before, not because they’re healthy but they look like they’ll taste delicious ands there are so many fun ones to try.

I intend to write down the good moments, no matter how seemingly small. Not to share with anyone, but to remind myself.

I’m going to read more poetry after having my head in academic books for so long. I’m going to bake bread simply because I tried it the other day and it was surprisingly easy. I’m going to learn more British sign language, find new music to listen to, put flowers in the window more often.

I intend to fill my life with lovely things, with bright places, not supress my personality or compare myself to strangers on the internet. All of our goals are different because our priorities are different. We can’t compare our lives because we are all different people experiencing different challenges and striving for different feelings.

This isn’t to say that the conversations around new year’s resolutions are wrong, more that they’re misguided. This isn’t to say that we should never strive to better ourselves, to try new things and give our bodies and minds the best chance, to care for ourselves, to experience new things and push our comfort zone. But to say that we should do these things out of genuine desire and love for ourselves, not because of pressure. To do it because we want to experience more of life, not because we think we lack something.

We don’t know what challenges and joy the year will bring, but what we do know is where we are now and where we want to get to. Instead of resolutions, and by focusing on our intentions, we will be able to deal with whatever comes our way.

Social media has become obsessed with the idea of a ‘glow up’ and that implies that who we are is not enough.

As I said, before midnight on new year’s eve we are already enough.

Perhaps instead of focusing on how we look and how our lives look, we should focus more on how they feel.

So when the fireworks pop and the clock strikes 12, I encourage you to celebrate where you are and who you are. To enjoy the moment and not worry about what tomorrow will bring. A lot of us are fortunate to have many tomorrows left.

Let tomorrow worry about itself.”

– Lucy

PS.  “After reading all the incredibly inspiring and moving blogs accompanied with beautiful song suggestions, I wanted to share this song with you…I’m here, by Cynthia Erivo.

Lucy’s first time as a brave blood donor

Sixth day of Christmas.  This morning five years ago, the transplant coordinator gave us news that a liver was available for transplant, tests being done to determine its suitability for Lucia.  Our wait that day in ITU was filled, not with music, but gentle conversation, unspoken thoughts.  A nurse helped as Lucia’s mum, and sister, washed, dried, and plaited Lucia’s long hair.  Eight hours later it was confirmed.  As the light had faded for another family, their courage and kindness became a gift of light for us.

There was always music for Lucia, even in hospitals where much was enjoyed by her nurses, sparking conversations and exchanging songs.  A “Sleepy” playlist helped to distract, and nights to pass.  Stay Awake, by Julie Andrews, Piece by piece, by Katia Melua, and Sweet Silver Lining, by Kate Voegele, and her acoustic version of It’s only life.  There was music post-transplant, too, Lucia working hard with her physio team to her own chosen song, This girl is on fire, by Alicia Keys.

After her transplants, Lucia worked as hard as she could to get back to the dance floor.  Any dance floor – our front room, a disco, the local night club, parties, gala dinners and, above all, the Transplant Games.  She lived with a soundtrack in her head, making playlists with lyrics that were almost “notes to self” – and playlists for others, for parties, birthdays, the gym.  “Dancing is, like, my thing.  Even before I had any kind of (illness)…I think I was always a very bubbly, bubbly person but it’s made it, multiplied it, like a million times over!  If I hear a song I like, I just…I will not sit down…  And then you try and get other people up, and it kind of becomes infectious…”  It did.  Galway Girl, either song, by Steve Earle and Sharon Shannon, or Ed Sheeran.  Belle of Belfast (Tell me Ma), by Sham Rock.  Run the world (Girls), Beyonce, and so much more.

Slowly recovering in hospital after her second transplant, for a while Lucia was particularly withdrawn and silent.  We asked what music she might like to hear.  She dug deep and suggested a track we had to hunt for.  When we eventually found the CD Lucia was after, there were smiles in the room again as she started to listen, and move, to Amenitendeya, by the Mwamba Rock Choir.  This Ugandan Children’s Choir had performed in her school and Lucia revisited the exuberance of the young African girl who had embodied joy and gratitude in her widest of smiles and boundless energy. “My hands nearly dropped off I clapped so much.  Nobody wanted them to stop,” Lucia said.  “Mrs McBride let us put the CD on in the class while we worked.  We all sang along with it.  She knew it would help us do our work.  It made us happy.”

One morning, a letter arrived for Lucia.  She’d been chosen for the GB/NI Transplant team to compete in the World Transplant Games, in Sweden, 2011.  Her delight flowed as she sat on her own at our piano and played and played, no music in front of her, improvising out of sheer joy.  Untrained though she was, the sound caught our attention that evening, and we caught half an hour of it on tape.  Years later, her friend and former music teacher “tidied it up a little” for ears more delicate than her family’s as we prepared a celebration of Lucia’s life.  A beautiful expression of Lucia’s joy at belonging to the team, and the “transplant family”.  We can’t include it in this blog, so you’ll just have to imagine.

On that same tape was an earlier recording of a younger Lucia, singing at the top of her voice – in the bath.  Lines from two songs, over and over, with great, uninhibited enjoyment.   The first is I will always love you, by Dolly Parton. Then a momentary pause in Lucia’s singing and, in her best attempt at a Dublin accent (don’t ask), “I will always love you.  I will.  Always.  Always.”  Then her singing started again, with renewed energy and abandon: The Beatles, Ob-La-Di, Ob-La-Da, life goes on...

Fifth day of Christmas, and a guest blog from a good friend with a story to tell, and a song for our playlist…

“Hi, my name is Connie Taylor.  I was kindly asked by Live Loudly Donate Proudly if I wanted to write a bit about myself as what I like to call a Transplant-ee, and of course my immediate response was yes.  I don’t see myself as a seventeen-year-old university professor about to impart wisdom worth 22 Carat Gold, but I do hope I can shed some insight into the life of someone who (like the incredibly and admirably brave Lucia Quinney Mee) has gone through the strange and wonderful experience of a transplant, in the hope of inspiring others to learn more about it for themselves.

I was born in 2007 with a condition called Megacystis-microcolon-intestinal-hypoperistalsis syndrome (also known as Berdon syndrome – much easier to say!).  It is a condition that meant when I was born, my digestive and urinary organs had no muscle function.  Because my digestive system (stomach and intestines) didn’t work it meant that the only way I could be fed was intra-venously.  The downside of this was that my liver didn’t like it, and I ended up with severe liver disease.  So not only did I need a new stomach and intestines (small and large bowel), after a few months I desperately needed a liver too.  After 13 months of waiting and wishing, my parents finally got the call to say they found a match suitable for me to have my liver, stomach, pancreas, and bowel transplanted.  Unfortunately, it is currently not possible to have a bladder transplant so the need for catheterisation will always be a constant for me.

Thanks to the bravery of a young mother, whose son had sadly passed away in an accident, this young boy saved the lives of me and at least two other people and is someone I am eternally grateful for.  The choice to donate his organs gave me an opportunity that cannot match any other gift, the gift of life, and a second chance that must never go unrecognised.

This 12-hour transplant surgery, which included the removal of my spleen to ‘make room’, and removal of my appendix in case it should ever give me problems, was the first of many and varied surgeries. Unfortunately, being so small at the time of my transplants, there wasn’t enough space in my abdomen to fit the donor large bowel in, so this meant living with just a small bowel and an ileostomy (stoma) bag.

From transplant until now I’ve had many other issues; my new small bowel had ‘plumbing problems’ in 2014 (many tubes were tied, so to speak), I had a little bit of my own large bowel left in during the transplant, but this caused me no end of problems and was, literally, being a pain in my backside to put it very lightly! I eventually said sayonara to this bit of my own bowel in 2021 – my decision.  This was a major operation and meant I ended up with Sepsis, but it was worth it in the long run as that diseased bowel was not doing me any favours!  I said cheerio to a gastrostomy device in 2023 which used to give me nutritional feeds and liquid medication.  I also said hello to the use of a self-catheterisation device in 2022 which meant I no longer had to pee from a leaky suprapubic catheter tube, and I said ‘good to have you’ in the same year when I finally made peace with the inevitable reality of having a permanent ileostomy/stoma bag.  All things considered, you could say I had more of a spring in my step this past year, and all for very good reason.

Of course, growing up with this condition presented itself with many challenges such as the trips to the operating theatre which became a very difficult task for a long time, making me accidentally develop PTSD for a while (oopsies).  Yet, through the help of the wonderful child psychologist Dr Susie Willis, from Royal Belfast Hospital for Sick Children, I overcame my fear of anaesthetics and became more of a ‘cool cucumber’ when it comes to surgery.

On top of this, we cannot ignore the absolute rollercoaster that is school and navigating it, alongside a condition named longer than the alphabet, while everyone else’s worries seemed to only stretch to who said what at break time in the PE toilets!  If I’m honest, I never fully understood my medical condition for the majority of my childhood primary school years and I was a very reserved and shy person when it came to anything medical, so for about 16 years until sixth form in secondary school, I never mentioned it to anyone aside from my close family. But recently, my hospital experiences have somewhat faded out into the background, and I find myself being more open to other people.  That’s not to say I can’t still improve, but who doesn’t when it comes to confidence?

In hindsight, my life experience so far is something I am truly grateful for in a bittersweet way.  It has helped me become a very grateful person and approach things rationally with a positive outlook, despite my teenage cynicism at times.  This unique perspective of life has taught me many lessons and is probably worth more credit than I give myself now that I’m actually sitting and reflecting/typing about it!

So, as I write this during a free study period in my last year of A-levels (English Literature, Moving Image Arts, Performing Arts) with a self-catheterisation tube in my blazer pocket and a spare stoma bag in my schoolbag, I’m pretty excited for a future where hospital is something to very rarely think about. I do hope to pursue a career in the film industry and want to spread awareness around organ donation on a bigger scale, inspiring others to learn how they can one day save a life too.

Also, my song suggestion would be Pencil Full of Lead by Paolo Nutini –  a song which reminds me that even if there may be a multitude of problems going on around me, I still have all I need to get me through it.”

Connie – star performance as the Scarecrow
(School production of Wizard of Oz, Christmas 2024)