You know him from Downton Abbey, and now Hugh Bonneville has chosen to help tell the heart-breaking story of a family from west Hampshire whose little girl died.

Naomi House and Jacksplace Hospices have released a very special film today (11th May) that has been recorded by Lisa and Dominic Leggett who, last year, lost their beloved 2-year old daughter Lacey to a very rare medical condition.

After hearing about the story about dear Lacey Leggett, Hugh, who is better known for his roles in ‘Downton Abbey‘ ‘Notting Hill‘ and ‘Paddington Bear‘, quickly agreed to narrate the film. Hugh already supports several other charities that help children.

WARNING: You are likely to find Lacey’s story distressing, it may upset you, or cause you to cry.

On Valentine’s Day 2014, when Lacey Leggett was just 6-months old, this beautiful little girl was diagnosed an extremely rare medical condition called ‘mitochondrial TK2 cell depletion‘. She soon lost the ability to move, talk, or even eat. When Lacey was born her Mum and Dad had no idea what was to come. Lisa and Dominic Leggett tell how the condition didn’t show up straight away.

The night before her first birthday, Lacey took a turn for the worst. Lacey’s first birthday, Christmas and New Year were all spent in Hospital. It took more than a year for medical professionals to settle on a clear diagnosis. It sounds like a lifetime, but the diagnosis was very tricky as there have only been 45 cases of ‘mitochondrial TK2 cell depletion‘ confirmed in the entire world.

After Lacey was diagnosed, she and her Mum and Dad were introduced to Naomi House’s Paediatric Palliative Care Consultant. It was a scary time for Lisa and Dominic, but they soon realised they’d found the help they needed.

Lacey’s Mum, Lisa says it was very hard:

“The way we started to care for Lacey dramatically changed. The way we communicated with Lacey really changed. We had to learn how to look after a seriously sick child and we ended up spending 9 months in hospital with Lacey.”

There were trips to hospital in Southampton, and visits to Naomi House Hospice at Stockbridge. One night at home Lacey became very ill. An Ambulance was called, and Lacey was rushed to Southampton General Hospital where she was admitted to the high dependency unit. Lacey’s Mum Lisa was devastated:

“They made it very clear that if Lacey ended up in the P.I.C unit the probability of her coming out would be unlikely, and I felt as a parent that I didn’t want to put her through that. I didn’t want to see my baby hooked up and struggling, the Doctors at Southampton said there was nothing more they could do, so the decision was made to come here (Naomi House).”

Lacey’s Dad Dominic says it was the right move:

“You walked round and could see everyone was welcoming… it was bright and colourful… it was something you knew straight away… this is where she needs to be.”

Lacey and her Mum and Dad visited the Hospice over several months, enjoying the playground, swimming pool (something her Mum thought she’d never be able to do with with Lacey) and being cared for by the staff. As Lacey became more ill Dominic says it was clear they were in the right place:

“We could always read her (Lacey), we could see in her eyes that this was her time, and this was saying her good-byes.”

“We had to make the final decision for her. We wouldn’t want her to suffer…. the disease had taken over.”

Lacey’s last days were spent at Naomi House, and in the film it’s clear that her Mum Lisa didn’t want her precious little girl to die in hospital.

Lucy lost her fight for life on Valentine’s Day. Her family, and actor Hugh Bonneville wanted to tell Lacey’s story, and highlight the need to support Naomi House & Jacksplace.

Find out more here: www.naomihouse.org.uk

Watch the whole film above