Peterborough family Alton Towers 5k run in support of 4-year-old daughter with rare life-limiting condition
and live on Freeview channel 276
The small charity helps to support families affected by the rare Niemann-Pick disease; the condition that Kara Clapton (4)- whose family now live in Helpston- began to show symptoms of at two-year-old.
The genetic condition affects the body’s ability to metabolize within cells, which in turn causes cells to malfunction and die, affecting the brain, nerves, liver, spleen, bone marrow and, in severe cases, lungs.
Only around one on in 150,000 people are affected by the more common versions of Niemann-Pick but in Kara’s case the condition is more the serious type C and doctors have given her a life expectancy of between 10 and 12 years old but have not ruled out things improving.
Kara’s family have said that they only know of one other child with Kara's exact condition and they live in America.
Kara’s mum Nikita has described the condition as “degenerative and a mixture of Alzheimer's and Motor neurone disease.” Kara also has Cataplexy (muscle weakness) as well as autism, which makes her non-verbal.
Even the act of laughing can cause Kara to lose all muscle control and has led to several injuries due to falls.
Nikita said: “Kara is a very happy child, she’s a little adrenaline seeker, I call her my chaos in a bubble.
"She’s very loud and energetic, she may not be able to communicate like other children but she certainly is able to get her point across.
"She doesn’t let anything stop her from what she wants to do.”
The Alton Towners 5k takes place on November 12 at the famous theme park in Staffordshire and takes a route round some of the park’s premier attractions, including CBeebies Land, the Dungeons and The Smiler.
The day will be a family affair as Kara’s parents Lee and Nikita Clapton will be joined by a number of brothers, sisters and nieces and nephews for the run. The full list of runners will be: Lee, Nikita, Chloe Trowell, Aaran Trowell, Kyle deMeur-Wood, Chantelle deMeur-Worlding, Jordan deMeur, Caitlin Alisha deMeur and Alfie Jay deMeur.
Their JustGiving page can be found at www.justgiving.com/page/nikita-topley-1695559655173.
Nikita added: “Kara was diagnosed with Niemann-Pick disease type C in April. Since then we have received so much support from NPUK. They really are a lifeline for anything families like ours need or just want to talk.
"NPUK have been with us through this and really helped us feel seen, heard, supported and mostly not alone during our journey.”