Chronic illness, and the world of organ donation, can take you to extraordinary and unexpected places, like this story from Megan McGillin…

When life presents us with challenges, some individuals find the strength within themselves to rise above their circumstances, not only to survive but to thrive. My name is Megan, and I’ve embarked on a lifelong journey with liver disease that has shaped me in profound ways. This is the story of my resilience, my advocacy for organ donation, and the incredible friendship that inspired me to “Live Loudly.”

At the tender age of 10, I received a diagnosis that would alter the course of my life – cirrhosis of the liver. It was a daunting revelation for a child, but it was only the beginning of my medical journey. As time passed, I learned that I also had portal hypertension, a condition that further complicated my health. The prognosis from my medical team was sobering, suggesting that I would need a liver transplant by the age of 18, if not definitely by 21.

But here I stand, well beyond those milestones, without having undergone a transplant. My journey has been marked by determination, a commitment to a healthy lifestyle, and a strong belief in the power of advocacy and organ donation. I’ve embraced habits like regular exercise and avoiding certain foods, including alcohol, to protect my liver and prolong its function.

One crucial element of my journey has been my passion for advocating organ donation. This cause took on a profound significance when my dear friend, one you may already know, Lucia Quinney Mee, faced the daunting challenge of needing not one, but four liver transplants. Without the generosity of donors, Lucia’s story would’ve unfolded differently. Inspired by her incredible strength and resilience, Lucia initiated a campaign that would change lives – “Live Loudly, Donate Proudly.”

Lucia’s campaign was a resounding success, raising awareness about organ donation and emphasizing the importance of discussing this critical topic with loved ones. It resonated deeply with me, and I was determined to keep Lucia’s message alive and thriving.

As I ventured off to university to pursue a degree in Medicine, I decided to use my creativity and passion to further the cause. I designed and created lanyards adorned with Lucia’s slogan, “Live Loudly, Donate Proudly,” and the simple phrase, “Let’s talk about it.” These lanyards have become a symbol of hope, a reminder of the importance of organ donation, and a conversation starter.

My journey with liver disease has taught me resilience, compassion, and the importance of advocacy. It has shown me that life’s challenges can be transformed into opportunities to make a difference. My commitment to organ donation is not just a personal choice; it’s a mission to inspire others to become donors, to save lives, and to ensure that stories like Lucia’s resonate with others.

In early 2023, I participated as Miss East Belfast in the 2023 Miss Northern Ireland competition. Right from the start, I had a clear objective: to use this platform to raise awareness about organ donation in Northern Ireland and encourage people to have conversations with their loved ones about their organ donation preferences. Throughout the competition, I engaged with sponsors, hosts, and our local legend Dáithí Mac Gabhann. I shared my message through lanyards and had numerous discussions about promoting organ donation while also sharing our personal experiences with it. Although I didn’t win the overall contest, I did win the ‘Beauty with a Purpose’ category. This victory propelled me to continue advocating for organ donation, both at home with my friends and family and on various social media platforms. I even had the opportunity to speak about this cause on a national level during an interview with BBC NI. My dedication to raising awareness about organ donation was recognized when I received the Local Women’s Young Inspirational Woman of the Year award in August. The Miss Northern Ireland competition brought my message into the spotlight and opened up incredible opportunities and accolades for me.

Throughout this journey, my mission has remained steadfast, honouring the memory of Lucia, and keeping her voice alive. Lucia though no longer with us, was an unwavering pillar of support during my illness, and her memory continues to inspire and comfort me.

So, let’s talk about it. Let’s continue the conversation about organ donation, raise awareness, and honour those who have faced the unimaginable with courage and grace. Together, we can “Live Loudly, Donate Proudly” and make a lasting impact on the lives of countless individuals awaiting the gift of life.

Megan

Our second guest this week is Seána Maguire, Head of Spanish in Aquinas Diocesan Grammar School, Belfast… and more, as you will read…

Organ donation is a topic that has enriched my classroom practice as a teacher. It has really shone a light on the very important role that teachers play in the education of our young people on such a vital issue, providing them with accurate information and the opportunity to make their own informed decisions. I would even go so far as to say that I am a better teacher since I started learning about it.

I was first introduced to this by Lucie Dumont and the Chain of Life team in Quebec.  I will be forever grateful for the period of time that I had as a volunteer with them and how much this taught me.

On 30th June 2023 I was awarded the Sunday Life Spirit of NI Award for Education at the Culloden Hotel. This was a culmination of years of work and collaboration.

Seána Maguire, with her mum, receiving the Sunday Life Spirit of NI Award for Education 

It was a privilege to be nominated for this award by the Northern Ireland Organ Donation Team. The specialist nurses have been giving their time since 2017 to come in to speak to our Year 13 and 14 pupils as part of their Key Stage 5 Enrichment module in Organ Donation. Pupils would listen intently to them as they explained their role and how they provide support to the families of patients who come to an intensive care setting, often following a sudden traumatic event. Pupils get the chance to ask questions and learn about this in the relaxed classroom environment.

Our module has also received the support of the Belfast renal transplant team and pupils have enjoyed lectures on kidney surgery from Mr Tim Brown, Belfast City Hospital. Indeed, one of the first pupils on our first pilot scrubbed in with me to observe a living donor kidney removal by keyhole surgery and then the transplantation of the kidney in the operating theatre, led by Mr Brown. To see a kidney pink up after it has been transplanted into the recipient and begin to function as soon as that clamp comes off, is a sight that I will never forget, nor ever be complacent about.

Indeed, even a pandemic did not stop this formidable team from carrying out their work here in Belfast, showing innovation and creativity and approaching all new challenges with curious minds and a sole purpose to serve their patients as best they can. During remote learning, Dr Mairead Convery, Paediatric Nephrologist Consultant, gave a live lecture to our pupils via Microsoft Teams, and such was the interest, we had 60+ pupils online. This is a testament to the work of our medical experts and also to our young people.

Throughout this journey, it has been a privilege to work with and learn from many people who are all part of the organ donation family here. The Oisín McGrath Foundation has provided our pupils with opportunities to take part in the annual Gaelic games events, and indeed it was extra special for the Year 8 Gaelic team to win the Oisín McGrath Shield back in 2017. We have also worked with Transplant Sport NI and through Orla Smyth our pupils learnt all about the transplant games and how it is the recipients’ wish to honour their donor.  Taking part in the World Transplant Games is a testimony of this.

Orla Tinsley’s wonderful RTE documentary, Warrior, which tracks her in New York whilst on the waiting list for a double lung transplant with cystic fibrosis is another example of the strength and resilience shown when faced with such an adversary. Two weeks ago (& Sept 2023) she was awarded an honorary doctorate for her work by UCD.

On the Waiting List is a BBC documentary which should also be seen by all pupils across the country. Stephen Watson shows the reality of being on the waiting list, on dialysis and how getting that call transforms lives. It also shines a light on the world class renal expertise that we have here in Northern Ireland.

It is important to take a moment to also reflect on the fact that here I am, writing for the Live Loudly Donate Proudly blog. I was blessed to have the chance to meet Lucia Quinney Mee and got to spend an afternoon with her, and her mum Rachel. I knew back then that Lucia had an indomitable spirit and drive and as a young person, she was determined to bring organ donation into the NI curriculum. Our pupils watch clips of Lucia in which her strength, determination and resilience shine through as she speaks with passion about organ donation education.

As a teacher, it is a privilege to be able to carry on that work and to work alongside other teachers, donor families, recipients and families on the waiting list, from all education sectors in Northern Ireland, in the education working group, Public Health Agency. After working together online for a couple of years, we all had the chance to finally meet on 1st June this year at the launch of Daíthi’s law in Stormont and send love and wishes for the little pocket rocket that is Daíthí on his journey to hopefully getting that call one day for a much needed heart. (Weblink: Donate4Daithi)

A word of thanks to the wonderful team of colleagues in Aquinas Grammar School who have worked with me along the way, piloted lessons after school and in the curriculum, and always supported this with open hearts and enthusiasm. Our staff, pupils and families and wider-community have embraced this topic and have their own stories to tell. ‘WomenEd NI’ have also quietly encouraged along the way behind the scenes, with their motto of Being 10% braver.

Hopefully soon, teachers across NI will be facilitating conversations in classrooms about this important topic and young people will be leading the way in important matters of informed choice and consent. As the Irish proverb goes, Mol an óige, agus tiocfaidh sí (Praise the youth and they will flourish).

This week marks Organ Donation Week 2023 and our school community is getting active walking, running, swimming and cycling to honour the organ donors, the recipients and those who are on the waiting list. Perhaps you too might have time this week to walk a few miles and to contribute to the UK wide Race for Recipients?

Link: Race for Recipients 

Seána

In the first of our guest blogs this week, Ann, an artist and good friend who worked with Lucia on creating the logo for Live Loudly Donate Proudly invites us into their conversations in colour…

“Bright colours” Lucia said immediately! We’d just begun our chat about how she envisaged the logo for ‘Live Loudly Donate Proudly’.

Lucia’s affinity with the local landscape, and mission to live vibrantly within it, brought our conversation quickly to what the late summer was offering, right there, right then, right around us! We soon found ourselves talking over photos we’d just taken and sliding the colour picker about in photoshop plucking out colours palettes, directly from local landscapes.

Lucia’s penchant for purple drew her instantly to the hillsides of heather in bloom. Whin (gorse) yellows, and the greens of a long summer, following suit. Meanwhile, I was enjoying Lucia getting a kick out of the fact that purple and yellow were ‘complementary colours’ within the colour wheel!

Our ‘logo’ conversations continued and Lucia continued to teach me. We deliberated over forms and shapes to symbolise what Lucia could express so precisely in words. Eventually, we managed to hone it all down! A pair of leaf shapes, blue and yellow, would be representative of the precious acts of giving and receiving. When the colours blue and yellow are mixed green results. So, at the very core, where the leaves met, new green growth emerges – something truly miraculous created between them, between these extraordinary acts of receiving and giving. The outer circle protectively encloses all within. Its own form, having no beginning and no end, representing the ongoing, the eternal, something unceasing.

It was just over a year later on her Gala dinner night, 8th September 2016, when the penny dropped even further and I was completely blown away listening to Lucia speak, so honestly, so eloquently, to a huge crowd of people, of her personal experiences as an organ recipient. The entire room went silent and remained so, for her every word. Lucia’s openness and wisdom deeply affected very many people in the room that night and in those moments I began to understand why the extraordinary acts of giving and receiving around organ donation are themselves, in the truest sense, fully complementary.

What a privilege Lucia, to have had these conversations with you. I am blessed in this – thank you.

And let all of us keep on talking proudly about organ donation and help ourselves understand more and more of these acts of giving and receiving.

Ann.

It’s that Pink week again.  Organ donation awareness week.  There could be a building or two near you that is proudly wearing pink to provoke a conversation or two.   There will be a lot of information, stories, photos and videos on social media and in the press.  Maybe TV and radio mentions.  Banners and billboards.  Posters on buses and in bus shelters.  In some places there will be reminders on petrol pumps and beer mats.  Some of us might even be wearing pink…

Not the Space Station, just Meadowhall, Sheffield, dressed in pink to support organ donation…

This year, Northern Ireland joined the rest of the UK, and various other countries, in changing from an “opt-in” system to “opt-out”.  Instead of having to sign the donor register (we still can), we are all now presumed to be consenting organ donors, unless we opt out, or are in any of the exempt categories.  It doesn’t mean we are donors against our will, or against the wishes and sensitivities of our families.  Consent will always be sought from our families and without it organ donation will not proceed.  That makes it just as important, if not more so, to let our families know what we would choose, and to have thought about it all before we are ever in that demanding situation.

With help from a few friends, Live Loudly Donate Proudly will post a blog each day this week.  Something to help a conversation, help keep us in the pink.

It may be that a conversation that starts this week is the one that saves a life you love…

*That building…is…Meadowhall, Sheffield…

In all the tangled emotions associated with organ donations, the annual Transplant Games has more than a few to navigate. This year, in Coventry, the Games brought together around 1000 participants from transplant teams across the UK, and almost twice as many spectators.

Everyone there has a story to tell, and a goal of the Games is to tell those stories to anyone ready to listen. To show what life can mean with a new start, the gift of life from an organ donor. To encourage us all to have normal conversations about organ donation; to let our loved ones know our wishes should we ever be in the position to be a donor. To say thank you to all donors and their families, known or unknown. And to raise the roof in celebration of the chance to breathe again.

In early evening sunshine, teams and supporters paraded from the shell of the old Cathedral into Broadgate, the Square at the heart of Coventry City, and the opening ceremony began. Watched by Games participants and supporters, guests and civic dignitaries and by many others in the street cafes and surrounding balconies, a young woman took central stage.  18-year-old Doroti Polgar delivered a poem.  Doroti’s younger brother, Kristof, received the gift of new life when he was three years old.  Her poem is a letter written to her brother’s deceased young donor.

In April this year, in Perth, Australia, Kristof won four gold medals – tennis, table-tennis, squash and badminton. There were more medals to come in the UK Games in Coventry and Warwick.

Doroti has kindly provided a weblink for her performance and we are proud to offer it here…Dear Justin

– or read it below…

Stormont lawn,1st June 2023

Northern Ireland has a new law.   It went live yesterday, 1st June 2023.  Despite the title of this blog (see later) it’s a very real law.  Too much has gone into bringing it into being for it to be anything less.  Years of hard work, lobbying, campaigning, raising awareness, educating, persuading, hoping and, somewhere in there, praying.  And, in the last few years, a young man in the centre of it all, his smiling, determined face in countless photos and videos as politicians, ice hockey Giants, boxers and many others join the queue to stand beside him.  His name is on the new law that brings Northern Ireland into line with organ donation legislation elsewhere in the UK.  Dáithí’s Law.

Dáithí Mac Gabhann was born in October 2016 with Hypoplastic Left Heart Syndrome. It means that Dáithí was born with half a working heart, the left side not fully developing before his birth.  His future will depend on the possibility of a successful heart transplant from a suitable donor, and the generosity of a family that may be able to offer hope to another from the midst of their own hardest times.   Dáithí has been waiting for such a bitter-sweet gift for five years…

Yesterday in Stormont, the N. Ireland Assembly building, representatives from organ donation awareness charities and campaigners came together with teams from the Department of Health, NHS Blood and Transplant organisation, and the Public Health Agency to announce and celebrate the hard-won achievement of Dáithí’s Law.

There were speeches, short and engaging, introducing us to many of the hidden players in the long game that has finally landed this law over the line.  Thanks all round, expressed in words and applause and felt at real depth around the room.

Then Dáithí’s dad, Máirtín.  He spoke with the straightforward authority of love and gratitude.  Gratitude to the campaigners and public servants, many present in the room.  To community friends and family, to the best and most faithful in the media, and to others who have given immensely over the years and are no longer physically present with us.  As Máirtín expressed his deepest thanks to Seth, his wife and campaign partner, and then to his son, Dáithí, he managed his tears better than more than a few others in the room.

A very proud father, Máirtín said, who has learned and is learning, so much from his young son.  Grateful to him and inspired by him to go through the years of campaigning at high cost to each of them, planting and nurturing hope not only for Dáithí but for many, many more waiting on the transplant lists.  Words done, Máirtín lifted Dáithí into his arms.  There were tears then, and a standing ovation, and Dáithí’s law is live.

So.  The new law.  Simply this: its intent is to increase the current number of organs available to those in need of a transplant.  Instead of having to actually sign the register, or tick the box on the driver’s licence application (“I always meant to get round to it, just haven’t done it yet…”), the new opt-out system means that all adults in NI, unless in an excluded group, will be considered to be organ donors after death unless they chose to opt-out.

When is a law not a law?  Well, technicalities, legalities and philosophy aside, the new law will not mean anyone is obliged by the medical profession, or the government, or any other power-that-may-be to become a donor against their will.  Everyone will still have a choice – people are free to opt-in, opt-out or amend their decision at any time.  You can do it today.  Or tomorrow.  (Today’s better…)

And whatever your decision, whether you are happy to be on the list as a presumed donor or just never got round to opting out, your family will still be consulted (they always have been, so don’t presume that just because you ticked a box some time ago the job’s done.  Your family will still have the word.)

Imagine you are in that tiny percentage (1%) who dies under the right circumstances to be considered a possible donor.  When your death is confirmed, and only then, your family may be approached by highly trained staff to consider the possibilities of organ donation.

If your family know your thoughts and wishes about the possibility of donation you may have given them a gift that will help them in those difficult moments and, as donor families often say in the most moving ways, well beyond.

And that’s it.  It’s a new law, but it’s still up to you.  And your family.  So think about it, talk about it.  Make it part of a conversation with your family or with others close to you so everyone is certain of each other’s decision.  Don’t keep it to yourself.  And if you, or your family, are donors, or prepared to be donors, then say so.  Be proud.  Be very proud.  Live Loudly, Donate Proudly…

To find out more, visit Organ Donation NI  #YouCouldBeALifesaver

OK, if you’re not from somewhere in Ireland  you might have to google camogie…”an Irish stick-and-ball team sport played by women.” Or, today, on a wildly windswept and often wet complex of pitches in Ballycastle, it was played by about 150 eleven-year old girls (maybe more, hard to count, they didn’t stand still for long).

This was the second camogie blitz graciously organised by Cross and Passion College, the home school of Lucia, and her elder sister, Alice. In honour of Lucia’s passion to encourage conversation about organ donation, the school set up this annual event, inviting N Ireland’s Year 8 girls (first year of our Secondary Schools) to play for the Lucia Quinney Mee Memorial Cup, and the Live Loudly Donate Proudly Shield.

Read More »

Well, Day 12 folks!

I’m sure you will be glad to hear a little less from me for a while! Read More »

I love to learn. More accurately, I love to educate myself.

I don’t mean learn, like learning for an exam, revising…nope not my thing really. What I mean, is that I love to gain knowledge, explore topics and things that I am interested in. Read More »

I wonder if anyone is reading this right now.

I wonder if the people who have been reading my blogs actually enjoy them.

I wonder if it has helped anyone. Read More »