12/05/2025
Please share my story 🩷
Thanks to Theo, whose phot you can see bottom left, Imogen’s donor, Imogen, celebrates 9 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 4 and is enjoying school and becoming so incredibly smart. 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 getting over influenza, and she also has had issues with donor specific antibodies. Imogen has a constant battle with getting her blood levels normal. However life can be a challenge at times but regardless she does what she always does, and smiles through all her troubles.
Imogen took part in Taylor Swift club and performed mutable songs and dances with a group of friends at school. She loves to listen to a wide variety of music but she personally loves some Taylor Swift.
Imogen also had her first trip to the wax works in London. She loves to dress up making the perfect outfit ( even if it doesn’t look right)! She really has become her own little person.
She has also carried the love of Tottenham Hotspur and become a little YID thanks to her grandad. She visited the famous White Hart Lane and had a tour of the stadium.
She also took part in Transplant Active - Home of the British Transplant Games in Nottingham and had the most amazing time as she always does, meeting new friends. She-also went on to win gold in ball throw, sliver in cup stacking, and sliver in football. She also took part in the donor run in memory of our hero, and donor, THEO.
We are looking forward to taking part in Oxford this year. Imogen had gone up an age group this year.
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.
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
