Why did Lucy need a transplant?

Lucy was born with very complex heart defects.

She never let her health and disability get in the way, she always had a smile on her face.


Lucy underwent two major heart surgeries at 2 days and 5 months old. Unfortunately a third surgery was never an option and at 5 years old her parents were told to take her home and enjoy what time she had left. Lucy’s mum pushed for a transplant assessment, and thankfully the doctors at Great Ormond Street Hospital said yes!

The night we got the call that a heart had been found for her. Waiting for the fast response transport to collect us

Just before she went to theatre to receive her new engine

She received her new heart or as she fondly referred to it “my new engine” when she was 6 years old. She was home exactly 2 weeks after the operation and grasped life by the horns making the most of every opportunity she encountered.

Then the bad news...

Unfortunately Lucy inherited a virus from her donor called Cytomegalovirus (CMV) which showed itself within 6 months of the transplant and made her quite ill. It was at this time that the doctors also found she had levels of Ebstein Barr Virus (EBV) in her blood. It is this virus which goes on to develop into Post Transplant Lymphoproliferative Disorder (PTLD) if left untreated.

Whilst Lucy was under Great Ormond Street they were fantastic and kept a close watch on the EBV by regularly checking her bloods, scanning her and checking her lymph nodes.

This all changed when she went into Adult Services. Her mum asked the consultant what they did to keep a check on her levels and the answer was that they did nothing unless the patient showed symptoms. By the time Lucy showed symptoms, it was too late.

This needs to change, and it is something which the Charity will fight for.

The hospital asked us to take the cats in to the ward when Lucy had withdrawn treatment. Here she is looking at her kitten Nala

Our Mission

Supporting young people who are unfortunately diagnosed with PTLD following their solid organ transplant, which is what Lucy always wanted us to do.

Our Vision

Our wish as a charity is that hopefully our campaigns will make for better care and result in this cancer being treated earlier on with better success rates. Early detection is key.

Lucy grasped life by the horns making the most of every opportunity

Lucy attended Brockenhurst College where she had many friends. We have had so many students and staff tell us what a wicked sense of humour she had. When asked if she was ok, she would say “I’m ok, how are you?” She was always more worried about everyone else. She was also the go to friend for advice as well.

She never let her health and disability get in the way, she always had a smile on her face. Blood tests were something which she absolutely hated, she would cry and get worked up, then apologise for being upset.

18th Birthday

Everyone who met her warmed to her instantly, she always made people smile. She was such a caring person, not just to her family but also to her friends. Her dying wish was that we help other young transplant patients who develop PTLD. Unfortunately the was a battle too big for her and she sadly passed away on the 28th March 2021, aged just 21. 

Find out how you can help

There are lots of ways you can help us raise the profile and money for the young adults suffering with PTLD.


Contact us