Peterborough family to continue fundraising efforts for rare life-limiting condition in memory of 6-year-old daughter
A Peterborough family have vowed to continue to fundraise for charity Niemann-Pick UK in memory of six-year-old Kara Clapton.
Kara tragically passed away in her sleep on Monday morning (September 15) four years after being diagnosed with rare life-limiting Niemann-Pick.
The condition genetic condition affects the body’s ability to metabolize within cells and to use fats such as cholesterol, which can lead to dangerous lipid accumulation in organs like such as the liver, spleen, and brain.
Charity Niemann-Pick UK, which offers support to families living with a child diagnosed with the condition, estimate that fewer than 100 patients in total have been diagnosed with the condition.
Paying tribute to Kara- her mother Nikita- said: “She was absolute chaos. She was very intellectual, building things, breaking things and always causing mischief.
“She was a big sensory seeker and loved theme parks. We used to take her on the biggest rollercoaster she could be on.
"Anything strange and wonderful was her thing
A total of 20 members of those closest to Kara- including her parents Nikita and Lee- aunts, uncles and friends, were all set to take on an inflatable 5k in York this week and they have pledged to continue to do so despite Kara’s passing. All money raised will go towards Niemann-Pick UK.
The charity is in particular need at the moment after its head offices were destroyed in an arson attack in Washington, Durham last week.
Nikita added: “The charity is the only one in the country for Kara’s condition. They have been a lifeline for us. We ned to do this for Kara and for the charity to make sure that it can keep going and give other families like ours the support they have given us.
“We contacted them when Kara was diagnosed. We have been to conferences and met other families and created our own community. They funded Kara a wheelchair when we would have had to wait so long on the NHS, they provided an all-terrain pushchair when she lost her mobility, a specialised car seat and they have always been at the end of a phone when we have needed it. They have been an extended part of the family.”
Kara’s family also plan to continue with their Halloween House tradition, owing to Kara’s love of Halloween. Each Halloween, Nikita’s sister Chantelle Demeur-Worlding opens her house in Orton Goldhay up as a mini Halloween theme park during the lead up to October 31.
Nikita herself also plans to take part in Alton Towers 5k event in November, which takes a route around the famous theme park. As one of Kara’s favourite places in the world, Nikita was planning to run with a special carrier on her back with Kara strapped inside. She has pledged to still take part with weight on her back, some of Kara’s favourite toys and pictures of Kara.
All of the family’s effort can be supported on www.gofundme.com/f/niemannpick-awareness-campaign.
The story of Kara’s journey has also been documented across social media, including at https://www.facebook.com/profile.php?id=61550945415399.