Book of 2018…12 Days of Christmas

Now, to be fair, most of the books I read in 2018 were textbooks as I was finishing A Levels.

However, after I had a break from reading textbooks…I did finally pick up a book that didn’t contain chemical equations, biological diagrams or anything to do with sports science. Although they are all extremely interesting subjects – I needed a break.

So, what did I read? A light hearted comedic novel? A romance story? A crime thriller? No no no, I read a non-fiction collection of writings from some very inspiring women – a book called ‘Feminists Don’t Wear Pink…And Other Lies’. Read More »

Most wonderful time of the year…12 days of Christmas

The most wonderful time of the year.

For me I think so yes.

For many of us, Christmas definitely is the most magical time of year.

Although, for a lot of people Christmas can be a reminder of the person missing round the table, or of the difficulties of social situations or the nerves that come with the excess of food and drink that are part and parcel of Christmas. Read More »

“Once upon a Christmas…12 Days of Christmas – Live Loudly Donate Proudly”

“So here it is, Merry Christmas…”  The season of repeats.  They do it on the telly, and we do it for ourselves.  We all have our own Christmas traditions, whether you charge into it from early November taking every opportunity you can manufacture to make the glitz and glamour of it last as long as possible, or you try everything to avoid the hype until the last minute, or even prefer to hibernate and wait for it all to go away.  Whatever you do, that’s what tradition is – repeat.  If you go to church you may hear the same story and sing the same carols.  No apologies.  Decorations, trees, recipes, music, films…the ones they show on the telly or the favourites we choose to stream ourselves.  (We like Alistair Sim’s version of “Scrooge”.  It’s old now, 1951, but it’s still hard to beat, and Lucia laughed louder than anyone else every year.)

Looking for inspiration for the 12 days of Christmas blogs this year, we re-read the last set Lucia wrote, from Christmas 2018.  We loved them.  So here they all are again, one day at a time.  Repeats, with no apologies. And yes, we’re proud of her every word….


Once upon a Christmas…

So. We’ve all had our dinner, we are suitably stuffed with Celebrations, and the torn wrapping paper leaves a trail of destruction under the tree.

The whole family is together. Someone is probably asleep on the sofa and there is most likely a Christmas special on the T.V. Read More »

160 years of caring…

Birmingham Children’s Hospital is celebrating its 160th anniversary this year.

On Monday this week (21st November), a 7m x 8m mosaic of the hospital building, as it was in the early 1900s, was unveiled in Birmingham New Street Station.  The mosaic, on the floor of the station’s main concourse, is made up of over 850 images of the faces of past and present patients and staff.  And Lucia is smiling in there too…

BCH 160th Collage in situBCH 160th collage


The city’s modern hospital treats over 90,000 sick children each year, from across the UK, giving them and their families some of the most outstanding and professional specialist paediatric care available.

On this day (24th November) fifteen years ago, good friends kept us company in Birmingham while our eight year-old Lucia went through her first liver transplant.  The operation took about six hours. Late in the evening we were eventually able to see her, well-sedated, in the Paediatric Intensive Care Unit.  Our relief, though still only partial, was palpable.

Meanwhile, somewhere else, a family was only just beginning their own bereavement.  In their darkest hour, in kindness to people they knew they would probably never meet, they had given Lucia another chance at life.

Over the next twelve and a half years, our family discovered an exemplary quality of care and friendship from the hospital staff, especially the medical, surgical, and nursing teams working through the Liver Unit and Intensive Care, the physios, nutritionists, psychologists, teachers and play therapists, the Chaplaincy team, admin, and many more.  A care and kindness that went well beyond the hospital walls.

It took us into the Transplant Games.  It gave us a Transplant family including other patients and their relatives that have proved to be solid company through all those years.

When Lucia moved from the direct care of Birmingham Children’s Hospital to the adult equivalent, she wrote a letter of thanks to those who had shared in her care.

“…I will always remember the way I was treated with such respect, dignity and love and am forever thankful for the explanations I was given.  (Why do I have to be on this medicine?  What does this tube do?  Why should I have another transplant?)  No question too small and all explained to me in ways I could understand – everyone knew me so well, not just as a patient but as a person. 

Knowing I like to have all the information, knowing that I wanted to take responsibility for my own care and treatment plans, I wanted to know what was happening each step of the way and be in charge of my own body.

All of these things were so well understood and catered for by all the staff here.  Thank you.

I will always carry BCH in my heart and I will continue to take inspiration from you all.

Just Thank You, for Everything!…”

That gratitude, deepest and clearest in Lucia, became the norm for us all through our years with BCH and beyond, and the friendships formed remain as real to us today.  Although the years brought their share of fears and tears, and now include an always unfathomable sadness, they will forever be marked and held together with gratitude, steeped in kindness and caught in the wonder of Lucia’s own life, of her continuing light and energy.

In this 160th year of the Hospital we will drop our donation into the BCH “bucket”. Maybe you might do the same.  (Click on BCH Appeal)  Is it ever too much to say thank you again?

Organ Donation Week on ice…

Belfast Giants 1.10.22 (2)

Last night’s blog was posted a little earlier than usual.  Not because of Strictly Come Dancing (we could watch that on “catch-up”) but because we donned warm hoodies (organ donation-branded, of course) and went off to watch a game of professional ice hockey.

Not our usual habitat, and we spent some time preparing – how does it work, what’s the rules, how long does it last, how many players, how can you keep track of something so fast..?

Tickets had been organised for representatives of Northern Ireland’s organ donation groups by the Belfast Giants and Donate4Dáithí , the campaign run by the family of 5-year old Dáithí Mac Gabhann.  Dáithí, after four years waiting for a heart transplant, is already a campaigner. He commandeered the moment on the big screens in the intermission’s live interview with his Dad and made his point loud and clear  – “Organ donation saves lives!” The information stand in the central place on the Bridge was busy with people coming to learn more about transplants, meet Dáithí and Máirtín, and leave inspired to sign the register and talk with others.Belfast Giants - who is the Giant 1.10.22

Oh, yes, there was also a great game of ice hockey that we did, more or less, manage to follow, and after all the razzmatazz, the home supporters left the scene happy with  a 5-0 win.

A huge (alright then, a Giant) campaign boost for Organ Donation Week in this part of the world.  Big team, (some of them very big), big advertising, loud noise, strong message – all that energy and effort channelled into the tiny little bottleneck of a short conversation between a few family members.

But if that works, it can burst out of the bottle on the other side and may spark a new chance of life for one, two, up to nine people.  Nine new lives.  All their worlds open again, for them, their family, friends.  All they can enjoy, say, do, achieve.  All they can sing, dance, spin, laugh, create.  All they can give, share, inspire.  All they can love, and be loved.  All that, and much, much more.  All from opening a conversation about organ donation.

It’s worth everything Organ Donation Week can give to it.  Can you give it a few more minutes, too?  If you’ve already sorted it all with your family, and know what you might each do if it ever came your way, thank you for that.  Really, thank you.  But don’t stop now.    Start a conversation with someone else.  Spread it.  Pass it on.  Live Loudly.  Donate Proudly…site-logo

Organ Donation Week – Film night…

Luke AlexanderOrgan Donation Week, and it’s Saturday night so, unless you’ve got something more pressing to do, sort the popcorn, sit back, kick off your shoes and watch a couple of films.  Short ones.  Very short.  One is funny, clever.  The other, only a few minutes longer, is gentle, courageous, beautiful.  Both are brief glimpses into much deeper stories.  Behind the words, the glances, a depth of experience and emotion that is dizzying.

Luke Alexander is, we are very proud to say, a friend of ours.  Lucia found him first.  When Luke was 12 years old his life was saved by a 13-year old stranger who had told his parents he wanted to be a donor if anything ever happened to him.

Ten years on, Luke is a cyclist, a runner and a swimmer, enjoying the chance to compete in the Transplant Games.  Luke and Lucia were both members of the GB and NI team at the World Games in Malaga, Spain (2017) and two years later in Newcastle, England.  Luke recently completed his Coventry University degree in Media Production.  He used his film-making skills to create unique insights into the experiences of organ transplantation.

In 2017, at “Talk, Tell, Transform”, a Children’s Liver Disease Foundation week for young people with liver disease or transplants, young people turned their stories into short films.  Luke took it a stage further and interviewed himself, playing…well, best just to watch it, it’s less than five minutes short.  The link is at the end of this blog.  There’s another one first…

As Luke went through the intensity of his own experience of liver disease, and then transplant, he was sensitive to its impact on others, especially the young boy and his family whose kindness saved Luke’s life.

“I always think about him, whoever he may be. It’s consciously on my mind when I make decisions,” said Luke, adding that the boy’s parents had suffered an incredible loss.  “It’s something that I never forget, day in, day out.”

As well as the boy’s parents, Luke is aware, too, of the impact of his journey on his own family.  Further inspired by people he has met at the Transplant Games, Luke’s new fifteen-minute documentary, “The Other Side”,  aims to be a cathartic experience for parents who have been through, going through, or are about to go through that journey.  It is also a bravely understated insight for the rest of us.

No more to say, this is not a review.  Just watch the film (permission to skip the ads).  Better still, watch it with your family, with friends, and see where the conversation goes afterwards.  You never know when a conversation started through this film may save a life… Thank you, Luke, three generous families, and all those donor families we may never know….

The Other Side

Luke’s story – CLDF Talk, Tell, Transform 2017

309439778_509082343953026_3818703030712284820_n                                                                                 Learn it, and pass it on…


Shortening the queue for organ transplants…

Full marks this week for the Specialist Nurses for Organ Donation (SNODs) at Addenbrooke’s Hospital, an internationally renowned transplant centre in Cambridge.  They made their mark on the back of the city’s buses.  A clear message, on that bright pink background:  “Waiting in traffic is frustrating…but waiting for a transplant is worse.” 

Waiting behind a bus...Addenbrookes 2022

That transplant list is a complex queue, not like many we may be more familiar with where we simply wait patiently (more or less) for our turn to come.  Inching closer to the front.  Ten people to go.  Nine.  Eight.  Seven, six, nearly there…  This queue doesn’t work like that.

Diagnosed with a form of organ failure, or chronic illness, a patient is assessed by the medical team who may consider a transplant necessary.  Once on the active list, the patient doesn’t just get a number and wait their turn.  Time on the list doesn’t dominate the decision-making criteria.  It depends on many things.

Which organ, or organs, do they need? Age, size, weight, physical condition, blood type, and many more complex medical factors are all taken into consideration.  How long may they be able to wait?  Are they in acute organ failure or managing a chronic illness?  It may be considered better to “pass” some options for an organ if they are strong enough to wait a little longer for  a “better match” to come.  They may be on a super-urgent list where the medical team, as always, take the utmost care for the most perfect match possible, but with little time to wait.

And patients on the active list aren’t just waiting.  They are doing their best to remain as fit and strong as possible in readiness for the work to come.  If health dips too far they may need to be taken off the active list until they regain strength, enough to have the best possible chance to respond through the intensity of the transplant process and into a steady recovery.

And so it goes on.  A serious game of snakes and ladders, played in a blindfold.  Lives placed on hold, knowing little about how the list is progressing.  The calendar moves on, but they may not seem much closer now than they were.  Waiting for the phone to ring, grab-bag at the ready…

There may be a false alarm, or two, or more.  A call to the transplant centre in faith that a suitable organ may be available only to find, on admission to the ward, even preparing for theatre, that on further investigation all is not as hoped and the transplant can’t go ahead.  Still on the list.  Still waiting.  Hoping…

Only 1% of deaths are in circumstances where organ donation may be considered.

The protocols for considering the suitability of a recipient, of the potential donor organ, and how an organ may be offered and to whom, are long, detailed and complex.  The policy for the “distribution  and allocation” of deceased donor livers is 24 pages long.  It was revised in January 2022 by the Organ and Tissue Donation and Transplantation Clinical Audit Risk and Effectiveness Group (OTDT CARE), and will be reviewed annually.

When a potential donor organ is available, complex decisions are made within a short space of time.  If an organ is offered, and not deemed suitable, it may be offered for another patient.  There are only a few hours available for a successful process.

Patients and their families, and most of the other people involved, are spared these details. It sits with the medical teams, then the SNODs and their colleagues.  But somewhere in the picture is a patient, waiting for a phone call inviting them to come to their transplant centre as quickly as possible, perhaps in a family car, ambulance, air taxi, or all three, blue lights and sirens when needed.

Somewhere else another family’s life turns inside out, changed in the blink of an eye.  Unsuspecting, then plunged into the bright lights of Intensive Care, the persistent bleeping of medical monitors, and then to a quiet room and the news no one wanted to hear.  Only when it is certain, absolutely, that the patient cannot recover, and the news is accepted by the accompanying family, only then can another conversation be approached about the possibility of organ donation.

When the family has had no conversations about organ donation and no knowledge of their loved one’s wishes, it can be much harder to be focused and confident enough to consider donation a positive choice.  That 1% is reduced again.  Whether the legal system requires us to opt in to be donors, or an opt out system considers us potential donors unless we have said no, no transplant can proceed without the clear consent of the family.

The list is long.  Around 7,000 people across the UK waiting for that phone call.  “Waiting in traffic is frustrating…but waiting for a transplant is worse.”  A conversation about organ donation this week could make a difference…


Organ donation – a school for change…

Young people at the Something for Lucia 28.5.22

Friday afternoon, in a school.  Not where you’d expect to find teachers volunteering for extra time.  They should be heading for home by now, even with a bag full of homework books for marking.

We walked into the main Assembly Hall of Ballycastle’s Cross and Passion College to help prepare the space for the following afternoon. And there they were. Teachers, canteen staff, caretakers, working away like they had nowhere else to go. Half an hour before we arrived the hall had been laid out in neat rows of chairs and small tables, individual spaces for young people to sit in silence and labour through exams. The tables were already gone, chairs in neat semi circles no longer facing the front but focused on a small lectern, table and screen on the long wall. Huge purple and white flower arrangements were arriving.

Since we came back from a small funeral service for Lucia in London, in the first months of lockdown, we had been asked, sensitively, if we might, in time, “do something for Lucia” in her hometown.  “Probably.  When her Transplant friends and family can travel and gather safely again.  Something.  We don’t know what.”

And this was it.  We still couldn’t really define it, so the name stuck.  A “Something” for Lucia.  In her school.  We had come to help, but with outstanding generosity and quiet pride the school team beat us to it.  We looked around the overwhelming evidence of kindness filling the hall, the corridors, the canteen, the courtyard, and stood with Paul, the Principal, our words silenced by risk of tears.  “Community,” he said. “It’s Lucia making community. It’s what she does.”

The following afternoon, the hall was packed.  Young people (and a few others), her cousins, friends of Lucia’s from Ballycastle, from the Transplant Games, from Northern Ireland, Scotland, Wales, and England, even El Salvador, contributed their stories, photos, music, laughter and tears inspired by their much-loved friend.  Pieces of a growing mosaic.

This isn’t a report of the day.  It’s about those young people.  They inspired, as Lucia always said they would. She believed in young people. And here it was. The deep strength of love and conviction, humility in being part of something that had caught us all in a circle of energy.

They were young – as Lucia was – when her autoimmune hepatitis became evident, and her transplant world began.  They accepted what was happening with love and emotion, learning alongside us all. Taking it in and trying to understand.

When Lucia came to plan her first public event, a fundraising day for Children’s Liver Disease Foundation – games, cakes, and a presentation on organ donation in the Council Recreation Centre, her sister and her peers organised it with her.

There were many other presentations to classes, school assemblies, and youth groups.  Presentations at conferences and workshops with health professionals, and politicians.  The ones Lucia enjoyed most were with children and young people.

That’s where Live Loudly Donate Proudly was born.  A deep conviction that accurate information be provided to children, conversations about organ donation, and everything connected to it, including death and dying, made normal.  Normal for children and young people who often, to the surprise of adults, understand the essentials first and fastest.

That shaped Lucia’s vision of including organ donation awareness on Northern Ireland’s National Curriculum.  With ready support from her school, Lucia presented her case to the Minister for Education.  It connected.  Lucia’s campaign continued, even when many of our politicians had “left the room” for a few years.

By the time the politicians returned, they were too late to meet Lucia.  Her school, family, and friends presented her vision again, to the Departments of Health and Education.  By then, the Health Department was preparing a process of public education for a potential change to the law on organ donation.  Lucia’s vision fitted perfectly.

With work from a team of transplant recipients and their families, teachers, donor families, and health professionals, lesson plans for Primary and Secondary Schools are now almost complete and ready for piloting.

Our children, young people, with the correct information and obstacles removed, are an engine of change.  Changing a law is one thing.  Changing a culture grows from a different place, and Lucia’s vision was to nourish one of its deepest and most fruitful roots.

The “Something” for Lucia gathered people together who each had their own pieces of the mosaic of her life.  As we listened in that school hall to her friends, there was no doubting that Lucia was right.  In those children, now young women and men, who had learned of organ donation, of life, through their own experiences as they grew together, it was palpable.  They carried Lucia’s story, and the vitality of organ donation, with passion, gentleness, courage, laughter and wisdom, with love.  Seeds of a very special world.

You were right, Lucia.  Give our children the right information, step out of the way, and watch it grow…




A bit of a splash for organ donations…

Killary 2022 (2)

In the last couple of years, sales of wetsuits, dry robes and fluorescent tow floats seem to have soared, as more and more people take the plunge into cold water swimming.  With the right care and attention, often in the company of a few friends, it can be a healthy adventure.  It can do wonders for those endorphins, which ease anxiety and depression and help create an improved sense of wellbeing.  You might wonder why we don’t all nip down to the local sports shop, get that huge changing robe and get on with it.  (NB There are other ways of producing endorphins than plunging into freezing water – fortunately.  Says a coward…)

Swimming, even in the kinder waters of the heated, chlorine-dosed pool, is generally a Good Thing.  For many who who have had transplants, swimming (and, yes, other sports and physical activity) can do all the above to assist with the recovery process, physical and mental.  It’s one of the most popular sports of the Transplant Games, and it’s not just about winning medals.

Lucia found a “happy place” in the water, swimming through it, surrounded by it, supported by it.  It was a place where her mind could find some respite.  Maybe it was no coincidence that she was born in a small birthing pool.  In the last couple of years, her Mum has found solace, energy and sheer pleasure in her regular swims from the beauty of our beach – whatever the temperature.

A couple of weeks ago, she accepted the challenge of a 2km swim in Ireland’s only fjord, beautiful steep-sided Killary, in Connemara. Jumping off the back of a boat with about 70 other people in her “wave” (there were about 550 swimmers in total), she was encouraged by the reassuring presence of kayakers and safety boats.  Much to Rachel’s surprise, and our relief, she completed her challenge in a few minutes over an hour, wading triumphantly ashore in brilliant sunshine.

It was a success.  Under the green, tagged swim cap of the Great Fjord Swim Event, Rachel wore Lucia’s red Birmingham Children’s Hospital swim cap.  With the confidence of a completed swim and a blue t-shirt to prove it, Rachel is hinting at another expedition to Killary next year.  Not only to swim, but to make a braver splash of publicity for organ donation, somehow.  There’s time to think about it.

The same day, in Donegal, Seamy McDermott celebrated 20 years since his kidney transplant with another challenge.  He’s already run 20km and cycled 600km this year and finished off his list with the Maple Swim, a 4km swim across Sheephaven Bay.

“My aim in doing all these challenges is remembering my kidney donor and their family. In doing so, I hope to raise the necessary funds for the renal unit at Letterkenny University Hospital. I want to do something that will be mentally and physically gruelling because the pain of these challenges can never come close to what being in the renal unit feels like.”

Of course, as we said, there are warmer, and easier ways to get those endorphins moving.  This Organ Donation Week, you could just go for a walk…  The week’s campaign is encouraging us to go for a walk (in shocking pink, if you like) and prompt some more conversations about organ donation.  You could get creative and walk a route in the shape of a heart, or a liver or kidney, or other transplanted organ, and even record the walk on a tracking app.  (You’ll have to look that one up yourself.).  When you’re back, warm, dry and comfortable, you could add some suitable photos to social media and use #OrganDonationWeek or tag @nhsorgandonor and see who else is out there doing the same.

Mental health, fitness, plenty of open air, maybe some cold water, and raising awareness of organ donation that could just mean someone else, maybe even someone you know, would be able to enjoy all of that as well…what’s to lose?2223-0263-odw-heart-walk-fb-1200x628