Market Harborough family support Rainbows in daughter’s memory

The family of a Leicestershire girl who died when she was just five-years-old are taking on a 10 mile trek in her memory.

Lauren Kilby, of Market Harborough, was diagnosed with Monosmy 21, an extremely rare chromosome disorder shortly after birth. Lauren was profoundly disabled and unable to talk. She was fed through a tube and relied on medication and specialist equipment to keep her alive. Lauren lost her fight for life in January 2004, just 11 weeks before her sixth birthday.

“When Lauren was diagnosed in 1998, there were only seven cases in the world,” said her mum Claire. “There was no information on her condition and because it was so rare, doctors couldn’t give us a prognosis, they just said we would be lucky to have her for a year so we were privileged to have her for so long.”

Ten years on, her family – mum and dad, Martin, sisters, Hannah (23), Teigan (12) and brother, Mitchell (20) – are taking part our Walk of Life at Watermead Park on Sunday 29 June.

Lauren spent time at Rainbows and it was a haven where the whole family could stay for respite care.

Claire said: “We have done the Walk of Life in the past but we wanted to do it this year as it is a special anniversary and we want to honour Lauren’s memory.

“Rainbows was so brilliant for all of us, not only when Lauren was alive but also with bereavement support after she had died. The sibling support Hannah and Mitchell, who were 12 and nine, received when Lauren died, was also fantastic.

“Caring for Lauren 24 hours a day, I found that the lack of sleep was the most debilitating thing. So just to be able to come to Rainbows and sleep, knowing she was being cared for, was fantastic. And when we were at Rainbows, we could be a family and we could do normal things with our other children. And Lauren loved it at Rainbows, especially the music therapy.”

The family, took part in the Walk of Life in 2005 and raised £1,300. This year, they are calling on other people in the community and join them in supporting us. The Kilby’s will be taking on a 10 mile trek but participants can choose between a one, three or 10 mile route. There will also be a children’s fairground, live entertainment, stalls and canal boat rides.

Claire added: “We know that Lauren will be so proud of us for taking part in the event and it helps to keep her memory alive. Lauren was a very, very smiley little girl who gave so much love to us all.

“Rainbows was so important to us and it is important that people support the hospice so they can continue to help children like Lauren and support families like ours.”

To support the Kilby family, visit