Tommy's Journey

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21/09/2026

💚 ORGAN DONATION WEEK 💚

This week is Organ Donation Week — a chance to raise awareness of the incredible impact organ donation can have on individuals and families across the UK.

Organ donation can give someone the chance to live, grow, make memories and experience moments they may otherwise never have had.

Whether through deceased donation or living donation, the decision to donate can be one of the most extraordinary gifts a person can give.

This week, we encourage you to:

💚 Learn more about organ donation
💚 Talk to your loved ones about your wishes
💚 Make sure your family knows what you would want
💚 Help spread awareness and start the conversation

For families waiting for a transplant, organ donation can mean hope, time and a future.

Let’s keep talking about it. 💚

17/09/2026

Have you got an hour spare to come and join us on Friday or Saturday?

This time tomorrow Inspire24 will be well under way, I know our teams would appreciate a friendly face to work along side and keep them going for a whole 24 hours!

Its only £1 a session to do you bit 🩵 www.inspirept.co.uk to book on.

If you'd like to make a donation or sponsor someone in the event, please use the link below

https://www.justgiving.com/page/inspire24?utm_medium=FR&utm_source=CL

19/07/2026

On Friday 17th July, we celebrated Tommy’s nursery graduation. It’s fair to say there wasn’t a dry eye in the room from either me or his dad. 🥹💙

Watching him stand amongst his peers, singing his heart out to a song he had been practising for months, really stopped me in my tracks.

It’s an emotional moment for any parent, but there was a time when this moment wasn’t promised for Tommy.

Thinking back to the teeny-tiny baby lying in that hospital bed, fighting for his life, it’s still hard to believe that was our reality. Yet somehow, we are nearly five years on. 🥹

When I look at Tommy now, the wires, the machines, the constant blood tests and the stomach-sickening fear can sometimes feel like a bad dream I once had.

But it wasn’t a dream. It was our reality.

And it always will be.

Without knowing his story, you would never know what he has been through. You would never know just how vulnerable he truly is. And that’s what makes his journey so difficult sometimes. People see a normal, healthy four-year-old boy — and, for the most part, he absolutely is.

I couldn’t be prouder of his resilience and strength.

But Tommy will always face challenges. He will always have a weaker immune system than his peers, and I will always be that little bit more cautious. Because I will never allow the fight he fought as a baby to be forgotten or wasted.

None of this hinders Tommy. If anything, I truly believe it has helped make him who he is today.

A very BIG character.

A character whose cheekiness can only be laughed at and appreciated. His nursery teacher said to me, “I don’t think we’ve ever had a character quite like Tommy,” while another said, “He just makes us laugh all day.” Both said with huge smiles on their faces.

He’s your typical boy — loud, boisterous, addicted to snacks, obsessed with superheroes and constantly wanting to fight someone. 😂

But he also has the biggest heart.

He will always ask me how my day at work was. He’s always there to give me a huge cuddle when it’s needed most. And he protects and loves his baby brother like it’s a full-time job… apart from when they’re scrapping, of course. 🥲😂

I honestly couldn’t be prouder of him.

He makes me burst with pride, and I am so excited to see where his journey takes him because, believe me, this boy is destined for big things. 💙

So, if this post can show you anything, please let it show you that there really is sunshine after darkness. ☀️

Every journey is different, and I know just how incredibly lucky we are with ours. But I have been in those dark places, and sometimes, they still exist for me today.

The difference is that I am now exactly where I need to be.

I am the luckiest Mummy in the world, and to me, that is all that matters. 💙

No matter what your story is, please reach out. I am always happy to talk to you and support you in any way that I can.

There is hope. There is life after the darkness.

And sometimes, the tiniest babies grow up to become the biggest characters. 🥹💙

#🥹💙

19/04/2026

Today is World Liver Day 💛

For most people, the liver is something we rarely think about… until it stops working.

Every year in the UK, hundreds of children rely on a liver transplant to survive. According to NHS Blood and Transplant data, around 80–90 paediatric liver transplants take place each year, giving children a second chance at life. (bjgplife.com)

But the need is still greater than the number of organs available. Right now, around 460 people are waiting for a liver transplant in the UK, and thousands more are waiting for other life-saving organs. (NHS Blood and Transplant)

For children, the wait can be especially uncertain. While the average wait for a liver can be a few months, some children can wait much longer depending on donor availability. (NHS Organ Donation)

Some babies are born with rare and life-threatening conditions like neonatal haemochromatosis — a disease where iron builds up rapidly in the liver before or shortly after birth. This can cause severe liver damage within days or weeks of life, meaning some newborns need urgent, life-saving treatment or even a transplant just to survive.

A liver transplant doesn’t just save a life — it transforms it. Children who receive a transplant can go on to grow, play, go to school, and live full lives, although many will need lifelong medication and regular hospital care.

💛 This World Liver Day, we raise awareness for:
• The children still waiting
• The families navigating transplant life
• And the donors who give the ultimate gift

Please consider having the conversation about organ donation. One decision can save multiple lives.

24/03/2026

Four years ago today, we brought our son home from hospital after a life-saving liver transplant 🤍

It hasn’t been without its ups and downs, but we are beyond proud of the strong, resilient little boy Tommy is today. He’s thriving — enjoying nursery, getting ready to start school in September, taking part in Socatots, and loving every second of his training sessions. He’s always the star of the show, full of confidence, especially when dressed up as a superhero,he has the most amazing dance moves… and a little actor in the making 🎭✨ Watch this space — we have no doubt he’ll be on the big screen one day.

Children truly are remarkable. They take so much in their stride, showing strength and resilience in ways that never cease to amaze us. Tommy is the bravest little boy, with the kindest, purest soul, and he inspires us every single day.

While Tommy is doing incredibly well, life after transplant still comes with its challenges. The impact of viral infections on his little body, the emotional strain of hospital visits and blood tests, and the constant underlying fear as parents of what the future may hold — these are realities we continue to face.

Whenever we share Tommy’s story, people often ask, “He’s okay now though, isn’t he?” — and while we know it comes from a place of care, the truth is more complex. He is doing amazingly, and we are so grateful, but there is still risk, still uncertainty. It’s a feeling we wouldn’t wish on anyone, and one we’re thankful most families never have to experience.

What we do hold onto is gratitude — for the last four years filled with love, laughter, and unforgettable memories with our incredible boy, who never fails to make us smile 💙

Thank you for all your love and continued support — it means more to us than words can say 🫶🏼

28/02/2026

Today, on Rare Disease Day 2026, we shine a light on Neonatal Hemochromatosis (NH) — an ultra-rare but devastating condition affecting newborn babies and their families.

Neonatal Hemochromatosis, now most often linked to Gestational Alloimmune Liver Disease (GALD), occurs when a baby’s liver is severely damaged before birth.

Many people — including healthcare professionals — may never encounter a case in their lifetime, yet for affected families, its impact is lifelong.
Because NH is so rare, awareness matters.

🩵 Earlier recognition can save lives
🩵 Research and education improve outcomes
🩵 Sharing stories helps families feel less alone

Today we stand with every family who has experienced loss, uncertainty, survival, and hope through NH. Your voices help drive understanding, better diagnosis, and prevention for future babies.

Rare diseases may be individually uncommon — but together, millions of families worldwide are affected.

No family facing Neonatal
Hemochromatosis should feel invisible.

17/01/2026

⚠️ Trigger Warning: Medical journey / transplant 🤍

4 years ago today
On 17th January 2022, we captured the first ever huge smile of Tommy’s on camera.

It just so happened to be his mummy’s birthday — a moment we will treasure forever.

This smile came after everything he had already endured, following his transplant on 17th December 2022.

A huge smile that carried so much hope, strength, and love — proof that even after the hardest journeys, joy always finds its way through ✨🩵

07/01/2026

🚨 A&E is for emergencies — and the NHS needs us to protect it 🚨

Between November 2024 and February 2025, 384 people in England attended A&E because of hiccups alone, according to data from NHS England.

Hiccups can be uncomfortable, frustrating, even worrying — but they are not an emergency.

A&E is designed for real accidents and life-threatening emergencies:
➡️ chest pain
➡️ severe bleeding
➡️ breathing difficulties
➡️ serious injuries
➡️ strokes and heart attacks

Every unnecessary visit puts more pressure on a system that is already stretched to breaking point. The NHS is crumbling under demand, not because staff don’t care — but because it’s being asked to do too much, too often, for things that can be treated elsewhere.

If it’s not an emergency:
• Call 111
• Speak to a pharmacist
• Book a GP appointment
• Use urgent care or walk-in centres

💙 The NHS is one of our greatest assets — but it won’t survive unless we use it responsibly.
Save A&E for emergencies. Save lives. Save the NHS

💙

01/01/2026

The reality for an immunosuppressed child on New Year’s Day.

Tommy’s liver team at King’s College Hospital wanted him assessed locally after a few days of an upset tummy.

Thankfully after bloods and other samples were taken our local team were happy for Tommy to go home 🫶🏼

For most children it might be nothing — but for an immunosuppressed child, you don’t take chances. You get things checked. Always.

This is the part people don’t see: the constant fear, the sudden admissions, the strength our children show without choice.

While the world moves on, we sit still and hope and somehow all whilst smiling still 🩵

Address

Toddington
LU56EF

Telephone

+447725942209

Website

https://emea01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.tommysjourney.org%2F&data=05%7C01%7C%7Cf8c2758255

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