Naomi House & Jacksplace hospices released a very special film on Monday (11th May) that has been recorded by a family that lost their beloved 2 year old daughter to a rare condition just last year.
Timed to coincide with the beginning of Children’s Hospice Week (11th – 17th May), the film is narrated by Hugh Bonneville, and tells the story of the Leggett family from Andover. Lisa and Dominic Leggett lost their daughter, Lacey, to a rare medical condition on Valentine’s Day 2014.
Now the family have chosen to share their moving story in a special film that chronicles their journey from the point at which Lacey received her devastating diagnosis through to the present day.
Hugh Bonneville, who is better known for his roles in Downton Abbey, Notting Hill, Paddington Bear and W1A, agreed to narrate the film after being approached by Naomi House and hearing Lacey’s moving story.
Lacey had an extremely rare condition called mitochondrial TK2 cell depletion which did not present itself to her parents until she was 6 months old. Lacey’s first birthday, Christmas and New Year were spent in hospital and over time she lost the ability to move, talk and eat. It took more than a year for medical professionals to settle on a diagnosis. This is perhaps unsurprising considering only 45 cases of mitochondrial TK2 cell depletion have been confirmed across the world.
Following Lacey’s diagnosis the family were introduced to Naomi House’s Paediatric Palliative Care Consultant and finally found the help they needed. The hospice offered the family respite and emergency care and enabled Lisa and Dominic to make the most of the precious time they had left with Lacey.
Naomi House ultimately provided end of life and bereavement care when Lacey finally lost her fight with mitochondtrial disease, and continues to support the family to this day.
Keith Wilson, Marketing Manager at Naomi House & Jacksplace commented: “Lisa and Dominic’s courage has enabled us to really show people what Naomi House is all about, and to give people an insight into why our service makes such an enormous difference to families with life-limited and life-threatened children. We are indebted to them for sharing Lacey’s moving story and giving many thousands of people a better understanding of our transformational work. We must also thank Hugh Bonneville for the wonderful support he has shown our hospices and the assistance he offered in creating this very special film.”
Children’s Hospice Week is organised by Together for Short Lives and is the UK’s only awareness raising and fundraising week for children with life-limiting conditions and the services that support them. Naomi House & Jacksplace care for more than 360 life-limited and life-threatened children, young people and their families every year.
The charity’s support stretches across the seven counties of Hampshire, Dorset, Wiltshire, Berkshire, Surrey, West Sussex and the Isle of Wight.
Lacey’s Story can be viewed at https://www.youtube.com/watch?v=BM2iNaOCd_w or at the video below:
For further information on Naomi House please visit www.naomihouse.org.uk