Peterborough family raise hundreds for rare genetic condition charity Niemann-Pick UK in memory of Kara Clapton (6)

On Saturday (September 21), 21 family and friends of six-year-old Kara travelled to York to take part in the inflatable 5k event taking place at York Racecourse.

The event had been planned to take place for months in support of the charity Niemann-Pick UK, which offers support to families living with a child diagnosed with the rare genetic condition. It is estimated that fewer than 100 patients in total have been diagnosed with the condition.

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.

The charity offered invaluable support to Kara’s parents, Nikita and Lee, ever since their daughter was diagnosed with the condition at the age of two.

Those who took part still decided to take on the challenge despite Kara sadly passing away on Monday last week (September 15).

Kara’s family decided that they still wished to take part to keep Kara’s legacy alive and to offer support to a small charity in desperate need of all the help it can get, especially after its head offices were destroyed in an arson attack in Washington, Durham last week.

Kara’s mum Nikita said: “It was chaotic, it was great! It was scorching on Friday and Sunday but very wet on Saturday so we are blaming the weather on Kara. We are sure she had a lot of giggles watching us. It was definitely her kind of day!

"We’ve had lots of offers from family members and other people to take part in events in Cara’s name and that’s great."

Nikita 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.

Further events are also expected to place across the year such as in Huntingdon as well as Nikita’s sister Chantelle Demeur-Worlding opening up her house in Orton Goldhay up as a mini Halloween theme park during the lead up to October 31.

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.