Katie Johnstone will take part in Great North Run 2019 to find cure for disease that killed her mum

A woman from Preston will take part in Great North Run 2019 in memory of her much-loved mum. Katie Johnstone says her mum, Emma, died in June 2018 at the age of 44 after a long illness with Huntingson's Disease.

This is a condition that stops parts of the brain working properly over time. It's inherited from a person's parents.

It gets gradually worse over time and is usually fatal after a period of up to 20 years. The mum-of-three started experiencing symptoms in her early 30s, which stopped her from pursuing her dream career as a midwife.

Katie, who lives in Ribbleton, said: "Not a lot of people know what Huntingson's Disease is. "When I was growing up, my mum had present symptoms and sometimes stumbled. People used to laugh and think she was drunk.

"It really upset me, I was around nine or 10 years old."

The care navigator for Lancashire County Council was tested for the disease and the tests came back negative in July.

However, she 'feels guilty' to have escaped the illness as her sister, 21-year-old Holly, has been diagnosed with a juvenile form of the condition.

She explained: "She got her diagnosis a couple of years ago. It's heartbreaking. "It's a 50/50 chance [you will inherit it]. I do feel guilty for getting away from it.

"But I need to support my sister and she was very happy for me with my results." Katie's grandmother also died from the disease at the age of 47.

By taking part in the 13 mile run, the 25-year-old is hoping to raise awareness of the disease as well as money for the Huntingson's Disease Association.

The charity works to fund research into the illness, with the hope of finding a cure - as there is no cure currently. Katie said: "My aim is to raise awareness of this rare disease and raise money for the charity to fund research to help find a cure.

"This disease devastates families all over the world. There is only around 12 people in every 100,000 people who suffer from this disease.

posted Saturday August 17th
by Chantelle heeds