I lost my baby to Mitochondrial Disease and coped by founding a life-changing charity in her memory

Liz Curtis, 49, a former teacher from Warlingham, Surrey in London and partner Dave, 51 an electrician, lost their eight-month-old daughter Lily to Mitochondrial Disease in 2007. Turning her pain into a positive, Liz set up a charity to raise awareness of the relatively unknown condition in order to help others. Here, she tells her story.

In 2003, my partner Dave and I welcomed our first daughter, Katie, now 20. A couple of years later we happily ushered in our second daughter, Rosie, now 18. Parents to two healthy and beautiful children we had no reason for concern when I fell pregnant with a third daughter, Lily.

But Lily was born with Mitochondrial Disease, a rare condition that affects the body's organs and systems including the brain, heart, lungs, gut, liver and skin. A person with mito, as it's commonly known, may suffer from seizures, fatigue, vision and hearing loss, cognitive disabilities, respiratory problems or poor growth and eventual death.

We lost Lily in April 2007.

Despite our heartache, I wanted Lily’s memory to live on and more awareness to be raised about the condition. So, with the loving support of family, friends and our local community we founded the The Lily Foundation in October the same year.

Today is Lily’s birthday and a better time than ever to share our story - particularly with the impending arrival of World Mitochondrial Disease Week in September.

First signs something was wrong

It was during the routine 20-week pregnancy scan that the sonographer noticed Lily’s heart would beat and stop and then beat again. The blood flow between myself and Lily was good so there was nothing untoward to worry about.

I was asked to go to St George's Hospital every other day for two weeks to monitor Lily's heart. I was working and had to take time off, as did Dave, and it took over an hour to by car plus was hugely expensive to park. Fortunately I had a lot of family support to care for Katie and Rosie as it took the whole day.

I was 32 weeks pregnant when doctors found that Lily had still not grown and was the same size at 20 weeks. At the 34-week scan they found the blood flow between Lily and I had stopped.

Welcoming Lily

It was decided that I needed a cesarean section. Lily was born on August 24, 2006 - five weeks and one day early - weighing just 3lbs 8oz and was immediately taken to the special care baby unit.

She had to reach 4lbs in weight and it took 4 weeks, I remember one of the consultants saying, "Lily, will you just grow." We went home on 20th September.

Once home, I wanted everything to be as normal as possible and so planned a shopping trip to Croydon Central Shopping Centre. With three children under three to content with, my mum came along to help out.

While there, Lily had a seizure and started foaming at the mouth. First responders arrived very quickly and took us to the nearest hospital, Mayday. After a couple of days, once breathing on her own, Lily was discharged.

Mitochondrial Disease diagnosis

We took her back to East Surrey Hospital where she had been born, for 10 days for further tests and an X-ray revealed Lily’s heart was enlarged on one side. She was rushed to Royal Brompton Hospital by ambulance to see a specialist cardiologist, suffered further seizures and was later taken to yet another hospital: Chelsea and Westminster.

A couple of days later, we were told Lily could have a condition called Mitochondrial Disease and that it could affect her development. Exhausted and unaware what it was, I was told to go home for a break and spend time with my other girls.

A couple of hours later the hospital contacted me. When I arrived back, there was a weird atmosphere. Lily had been moved to the nurses station - she looked grey and tiny.

She had another seizure and experienced a cardiac arrest. She was transferred to the Evelina Children’s Hospital at Guy’s and St Thomas’ Intensive Care Unit. I’ll always remember being in the ambulance - it was like a spaceship and Lily was in an incubator that looked like a cocoon.

She was put on a life support machine and a muscle biopsy and lumbar puncture was carried out. I didn’t even know what these tests were: it was terrifying watching our baby go through this.

Later we were told that Lily would not make it if her life support was withdrawn. She was in so much pain that we made the awful decision to turn it off. We sat and waited and held her, fed her, kissed her and loved her in those precious last moments with Rosie and Katie and surrounded by family.

But, Lily made it through the night. The doctors couldn’t tell us how long she would survive and advised us that we could take her to a hospice or go home.

We chose to go home - whatever time we had with Lily we were going to spend it together as a family. Lily came back home on October 30, 2006.

She put on weight, began to smile, gurgle and laugh especially as the doctors put her on high-calorie milk. Her big sisters, aged one and three at the time, adored her.

Although everyday was a gift to Lily, it was also a very emotional way to live - we were waiting for our baby to pass away. I couldn't bear her dying on her own so she slept on my tummy every night - we were always with her.

Lily began to lose weight by the middle of April 2007. It hurt me to see her not smile as much - we had hoped quietly for a miracle.

She died in hospital on April 30, 2007.

Life after death

We had two children and we had to live with loss - how was I supposed to get through the days?

I remember trying to come to terms with Lily’s loss and coming down the stairs one morning to Katie asking if she could do some painting. I decided then that Lily was never going to have a negative impact on our lives and that our memories would all be happy ones of her.

It was OK to be sad but it would not interfere with our relationships because Lily lived with us. I was determined not to feel guilty about living our lives.

We asked for donations at her funeral instead of flowers because we were trying to fundraise for some equipment at our local hospital. It wasn’t very long before people wanted to raise more money for us and I realised that there wasn’t a charity solely to research Mitochondrial Disease for us to donate the money to.

The Lily Foundation

By October 2007 we had set up The Lily Foundation, a registered charity and in February 2008 had our first charity event. The staff at the charity knew Lily personally and have been involved since its launch. Others have lost loved ones to Mitochondrial Disease, or know someone with the condition.

In October 2022, I was awarded an MBE for services to people with Mitochondrial Disease. Lily has lived on touching many lives, raising money for vital research and pushing for mito awareness - she was always a fighter.

Some of The Lily Foundation's aims are to to fund research; to support families; to raise awareness and here are some landmark achievements:

• Raised over £8.5 million

• Changed the law on mitochondrial donation

• Developed and funded their own genetic testing programme - Lily Exome Sequencing project

• Invested in 20 research projects across the UK

• Funded researchers, scientists, and specialist nurses in the UK

• Send families on respite breaks to Center Parcs

• Help fund specialist equipment

• Connect families and patients so that they are not alone on their journey

• Host a respite weekend and have set up a support group for young adults

• Support over 1200 UK families and patients, through our support networks, often from diagnosis through to end of life and beyond.

World Mitochondrial Disease Week 2023 runs from 18-24 September. Learn more about the awareness raised and support offered here.