Fighting mito,
finding hope.
The Lily Foundation was founded in 2007 by Liz Curtis in memory of her daughter Lily, who died from mitochondrial disease at 8 months old.
Founded in 2007, The Lily Foundation is the UK’s leading charity dedicated to fighting mitochondrial disease, a rare and life-limiting condition. Its creation was inspired by the tragic yet inspiring story of Lily Merritt, whose brief but impactful life sparked a mission to support families, raise awareness and fund critical research.
This is the story of Lily as told by her mother and our charity’s founder, Liz – a journey through love, loss and the incredible legacy that continues to transform lives today.
On August 24th 2006, Lily was born via caesarean section five weeks premature, weighing just 3lbs 8oz. Despite her small size, Lily appeared to be a healthy baby. She was admitted to the special baby care unit, and for the first couple of weeks Lily’s weight gain was good, but then it slowed down. It took Lily four weeks to reach 4lbs which was the weight she had to be for the hospital to allow her to come home.
On September 20th Lily finally came home. However, we quickly became concerned as she wasn’t gaining weight and remained at just 4lbs. Medical tests were scheduled, but before they could begin, Lily experienced her first seizure while I was out shopping. She stopped breathing, so I called an ambulance and she was rushed to hospital. Although she began breathing again on her own, and the hospital discharged her, we knew something was very wrong.
We took Lily back to East Surrey to the hospital where she was born. She was admitted and a week of tests followed, culminating in a chest x-ray that revealed an enlarged heart. Lily was rushed to the Royal Brompton Hospital by ambulance to see a specialist cardiologist.
He diagnosed a serious heart condition but assured us there was no immediate danger. On the journey back to our local hospital, Lily suffered another seizure, requiring mouth-to-mouth resuscitation from a nurse accompanying us. Again an ambulance was called, and Lily was taken to the Chelsea and Westminster Hospital where she recovered well and was kept in overnight for observation.
Two days later our worst fears were confirmed when doctors began discussing the possibility of Lily having a disease called mitochondrial disease. They told us it wasn’t good news and that it could affect Lily’s development. Just hours later, she had another seizure. This time she experienced a cardiac arrest. She was transferred to the Evelina Children’s Hospital at Guy’s and St Thomas’ Intensive Care Unit.
The following day the consultant in charge of the intensive care unit introduced herself to Dave and I. My initial meeting with this doctor will stay in my memory forever. She congratulated us on our beautiful baby girl. She then told us how concerned she was about Lily. She told us again that they suspected Lily had mitochondrial disease, that there was nothing they could do for her, and that she was going to die.
When we asked how long she had, they said probably days. In this day and age, it can’t be often that doctors have to tell parents of an 8-week-old baby there’s nothing they can do for them. There was nothing they could even try. As parents we just had to wait for our baby to die.
Lily had to undergo more tests, including a muscle biopsy. This was taken to test for mitochondrial disease. We were told that the results could take weeks. This seems like forever when you’ve been told your baby has days to live. We were introduced to the metabolic team and the metabolic consultant, Dr Mike Champion. His advice in terms of how long Lily would live for was less definite than the intensive care team. He insisted that mitochondrial disease affects individuals very differently. However, he was more definite that Lily wouldn’t have a medium- or long-term future.
During her time in intensive care Lily was ventilated and dosed up with morphine. Over a week they tried to take her off the ventilator, but each time they turned the machine down Lily was unable to breathe on her own.
Faced with the reality that Lily only had days to live, we had to make the heart-breaking decision to remove her from the ventilator. We invited friends and family to come and say goodbye, and were moved to our own room so that we had privacy when she passed away.
But Lily defied all expectations. When the machine was turned off, she began to breathe on her own. Doctors said she would never breastfeed again, but Lily proved them wrong. From this point we had to make a decision – to leave Lily in hospital to die, go to a hospice with Lily and our other two children, or take Lily home. We decided to go home. Our other two children were one and three at the time and we knew that we didn’t have Lily for long, but that we wanted to have ‘normal’ family time with what we had left. Lily came home on October 30th 2006.
No one could tell us how long she was going to survive. Every day was a bonus, but also a very difficult way to live. We were basically waiting for our baby to die. Every night she slept on my tummy, because I couldn’t bear the thought of her dying on her own. I wanted her to know that I was always there with her.
We lived like this until the end of January. At this point the doctors were pleased with Lily’s progress; she’d done much better than they’d ever imagined. She was still very tiny, she hadn’t been weighed since knowing that she was dying, but I’d guess she was well under 4lbs.
For the next three months, Lily thrived in small but extraordinary ways. The doctors decided to put her on high-calorie formula milk and Lily responded really well. She began to gain weight, play with her toys and even smile – something we never thought we’d experience. They also introduced heart medication to try and improve her heart condition, but by April 2007, Lily’s progress stalled. Her weight-gain slowed, she stopped smiling as much and signs of heart failure emerged. We’d hoped that she was going to be that miracle child, the one to recover from the ‘unrecoverable’.
Lily died in hospital on April 30th 2007.
Despite losing Lily, we feel lucky because it’s given us the opportunity to set up The Lily Foundation in her memory.”
We owe a deep debt of gratitude to the incredible medical teams who cared for Lily throughout her short but impactful life. Their dedication, skill and compassion made an immeasurable difference – not only in Lily’s journey but also in ours as her parents.
Despite the devastating loss of Lily, we know how fortunate we were to have had time with her. Without the intervention of these medical professionals, her death could have been tragically misinterpreted. If she had passed away during the seizure while I was shopping, it might have been recorded as a cot death. Similarly, on the day she required mouth-to-mouth resuscitation in the back of a taxi, it was the quick thinking and expertise of the accompanying nurse that kept Lily alive.
On the night of her cardiac arrest, it was a team of remarkable doctors who worked tirelessly to save her life, giving us the gift of more time to be with her. Their efforts allowed us to bring Lily home and experience moments of joy and connection as a family.
Once Lily’s diagnosis of mitochondrial disease was confirmed, the care and support continued. Our paediatric consultant from East Surrey made regular home visits, bringing us reassurance, hope and strength when we needed it most. These visits gave us the courage to navigate Lily’s condition with as much peace as possible.
The metabolic team at Evelina Children’s Hospital also became a vital source of guidance. Their expertise and willingness to provide answers, advice and emotional support were invaluable. Even now, their ongoing availability to assist other families affected by mitochondrial disease is testament to their unwavering dedication.
The skill and professionalism of these medical teams gave us more than just time to spend with Lily – it gave us understanding. We had the chance to learn about Lily’s condition, to know that her death was not caused by something we did or didn’t do. That knowledge has been a cornerstone of our healing and has inspired us to create The Lily Foundation in her memory.
We will continue to fight mito and find hope for everyone affected by it until the day there are effective treatments and a cure.
So little is known about mitochondrial disease.
With your help, The Lily Foundation can keep funding research that will one day find a cure.
With your help, we can keep raising awareness of mitochondrial disease, and keep supporting those who are living with the disease every day.
Please donate what you can to help us keep fighting mitochondrial disease and finding hope for all those affected by this incurable condition.
If you have any problems please email [email protected]
