Tommy's Journey

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Today is World Liver Day 💛For most people, the liver is something we rarely think about… until it stops working.Every ye...
19/04/2026

Today is World Liver Day đź’›

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.

đź’› 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.

Four years ago today, we brought our son home from hospital after a life-saving liver transplant 🤍It hasn’t been without...
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 🫶🏼

Today, on Rare Disease Day 2026, we shine a light on Neonatal Hemochromatosis (NH) — an ultra-rare but devastating condi...
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.

⚠️ Trigger Warning: Medical journey / transplant 🤍4 years ago todayOn 17th January 2022, we captured the first ever huge...
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 ✨🩵

🚨 A&E is for emergencies — and the NHS needs us to protect it 🚨Between November 2024 and February 2025, 384 people in En...
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

đź’™

The reality for an immunosuppressed child on New Year’s Day. Tommy’s  liver team at King’s College Hospital wanted him a...
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 🩵

✨ Happy New Year from all of us ✨As we welcome a new year, we hold space for hope, strength, and togetherness. 💛To every...
31/12/2025

✨ Happy New Year from all of us ✨

As we welcome a new year, we hold space for hope, strength, and togetherness. đź’›
To every family and individual affected by Neonatal Hemochromatosis, other liver diseases, and to everyone waiting on an organ donation list, please know you are seen, supported, and never alone.

This year, we renew our commitment to:
🤍 Raising awareness
🤍 Supporting families and patients
🤍 Advocating for better understanding, care, and access to life-saving transplants
🤍 Offering compassion and hope through every step of the journey

We are deeply grateful to our families, supporters, donors, clinicians, and advocates who stand with us. Together, we move into this new year with courage, kindness, and belief in brighter days ahead.

Wishing you a year filled with strength, comfort, and moments of peace and joy. ✨
Happy New Year đź’›

💚 Children’s Liver Transplants in 2025 💚Every number represents a child. Every transplant represents hope.In 2025, child...
30/12/2025

💚 Children’s Liver Transplants in 2025 💚
Every number represents a child. Every transplant represents hope.

In 2025, children across the UK received the ultimate gift — a second chance at life — through paediatric liver transplantation.

đź‘¶ What we know so far (UK):
✨ Over 60 children received life-saving liver transplants
🏥 Procedures were carried out at specialist centres including:
• King’s College Hospital
• Birmingham Women’s & Children’s Hospital
• Leeds Children’s Hospital
• Other UK paediatric transplant units

These transplants were made possible thanks to:
đź’š Donor families
đź’š Living donors
đź’š Specialist NHS transplant teams
đź’š And the strength of the children and families themselves

Behind every statistic is a child learning to walk, laugh, grow — and dream again.

🙏 Thank you to everyone who supports transplant families and helps raise awareness of organ donation. Together, we help save young lives.

4 Years ago today things were very different as Tommy and I were prepared for liver transplant surgery.At only 6 weeks o...
17/12/2025

4 Years ago today things were very different as Tommy and I were prepared for liver transplant surgery.

At only 6 weeks old it felt so unfair that Tommy had been dealt such a tough start in life, one he was going to have to fight so hard to hold on to.

At 8am on the 17th December 2021 I was taken into theatre, closely followed by Tommy two hours later. It is impossible to even try and comprehend the pain Tommys parents were going through. The transplant meant there was hope, but there was so much to be endured that day with no guarantees.

Our surgeons are heroes, their teams are heroes. These people do not get enough thanks and recognition for what they do. Tommy would not be here today without them.

The surgery was long and not without its complications for Tommy but he made it through, an absolute warrior. He continued to fight against every hurdle that was thrown his way over the next few months and against all the odds returned home after 5 months in hospital.

Tommy is the cheekiest, happiest little boy, he is the heart of what our charity is all about. We are here to make your journey easier, we are here to provide emotional and financial support during the toughest of times. Unfortunately we can't take away the pain, but we can try our best to provide you with the comfort you need.

On this day, and every day, please consider being an organ donor. You cannot put a price on the gift of life, there are so many people on the waiting lists, many of whom will never receive their gift of life.

Make a difference this Christmas and make sure you've registered 🩵

Kayleigh ###

Tommy’s Journey have teamed up with  and her UW business to help us raise the funds needed to support families whose bab...
04/10/2025

Tommy’s Journey have teamed up with and her UW business to help us raise the funds needed to support families whose babies have been born with Neonatal Hemochromatosis.

Kayleigh was Tommy’s donor back in 2021 and will now be donating half her income from UW to our charity 🩵

Kayleigh has been partnered with UW for nearly 6 years, helping people bundle all their household services into one simple monthly bill. Some families will see savings of over £1000 a year! This is a completely free service to find out how much you can save and you’ll be making a difference to those that need it at the same time 🧡

The info is below to get in touch, or you can pop us a message here and she’ll be in touch to arrange an appointment.

### A huge thank you as always, Team Tommy’s Journey xxX

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Toddington
LU56EF

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