12/05/2026
Today I’m 10years post transplant. 10 years of my life extra because of Theo and his amazing family.
please share share share love Imogen 🩷
Imogen, celebrates 10 massive years post double lung transplant. Her mummy Hayley shares their story
“Imogen underwent a double lung transplant when she was just 5 months old after a diagnosis of a disease that has a death sentence attached to it, Alveolar Capillary Dysplasia with misalignment of pulmonary veins (ACDMPV). It is a rare and generally lethal developmental disorder of the lung that typically causes very early postnatal respiratory distress and persistent pulmonary hypertension unresponsive to supportive measures.
Imogen is in Year 5 and is enjoying school and becoming so incredibly smart. She has recently started boxing and swimming lessons and she really is thriving, Imogen quotes “ I’ve found my passion”!
She loves to draw and is very artistic with arts and crafts being her favourite thing to do. She loves writing and her reading skills have come on leaps and bounds. She truly does try her best, her teacher always expresses how well she communicates with adults.
Imogen remains well, recently has had issues with donor specific antibodies which is where her donor cells start to increase which runs the risk of rejection. A few tweaks with medication and she seems to be responding well.
Imogen is currently looking at high schools and she’s very excited to be doing so, she’s been looking round them with some of her friends and it makes my heart feel so much joy. All of this was possible because of organ donation Imogen wasn’t going to survive a year of life without organ donation.
10 years of loving her, 10 years of teaching her, 10 years of just having her light up the world, 10 years Imogen has been given an extra 10years because a beautiful family made a choice to donate their little boys organs THEO our angel forever in our hearts and in our thoughts.
She has also carried the love of Tottenham Hotspur and become a little YID thanks to her grandad, Who she lost last year. She visited the famous White Hart Lane and had a tour of the stadium, Also attended her first ever game this season too.
She also taking part in Transplant Active - Home of the British Transplant Games in Sheffield and always has most amazing time, meeting new friends. She’s also hoping to bring back some more medals. We also as family take part in the donor run in memory of our hero, and donor, THEO.
People often say how amazing she looks and how you can’t tell that she has been through so many challenges from such a young age. People have the incorrect assumption that because she has received a new set of Lungs she is fine now.
We like to educate people about organ donation and the way Imogen’s life is now lead. Every recipient has to take a number of anti rejection medications which have a major effect on their bodies. Transplant life is not a cure, but it gives those, like Imogen, the best life they can, and as normal as possible too.
Imogen was only 5 months old when she was given her gift and therefore all her life she had always taken medications, had blood tests, had X-rays and other medical procedures.
There are many things we as family are grateful for and obviously seeing Imogen grow into a wonderful little girl with a bright personality and a strong head ( stubborn ) she has the biggest heart, and loves deeply.
However none of this would be possible without her amazing DONOR , THEO, and his parents for making such a brave decision at such a heartbreaking time. There will never be enough “thank yous” for what they did for us by saving our Imogen.
I often reflect on THEO and what should be his mile stones too, I can’t imagine how difficult that must be for his parents and family, but I pray they know we celebrate every milestone for him. He will forever hold a special place in heart his gift didn’t just save Imogen but also others. It’s amazing how someone you don’t know, you hold so much love for.
THEO is forever in our hearts and heads, but on poignant anniversaries such as today I feel his presence more so. I know every birthday that Imogen blows out a candle out she does so with THEO as they are united as one.
We must also remember the amazing teams at Great Ormond Street Hospital because without their amazing care, then families like ours wouldn’t have a similar story to share.
Please remember share your wishes tell you friends and family that you wish to donate should you choose to. Just know that all transplant recipients and their families are forever grateful.
If you would like to give Imogen a follow and see updates the please feel free
https://www.facebook.com/imogenstransplant.”
Please about your decisions with your loved ones, say and register your decision at NHS Organ Donation
