London marathon challenge to raise awareness of rare genetic condition

Jo Hague, who lives in Siddal, is the deputy headteacher at Ravenscliffe High School and will take on the 26-mile challenge on April 22 for the Huntingtons Disease Association.

Jo’s mum Karen Braithwaite has the condition and is cared for full-time by her dad Ian at their home in Skircoat.

“It’s a condition people don’t know much about,” said Jo.

“When I say ‘my mum’s got Huntingtons Disease’, people usually ask what it is and you have to go into a long explanation.

“I want to raise the profile of the condition. It affects every area of your body and every part of your daily life.

“Every person who has it deteriorates differently.

“My dad is 75 and is a full-time carer for my mum.

“She is house-bound, she uses a wheelchair and her speech has been affected.

“She has to be fed and that will deteriorate over time.

“My mum used to be a nurse at a special needs school and was so vibrant, but now she’s house-bound and just has to watch TV all day.”

According to the NHS, Huntington’s disease is a condition that stops parts of the brain working properly over time and is passed on from a person’s parents.

It gets gradually worse over time and is usually fatal after a period of up to 20 years.

The symptoms usually start at 30 to 50 years of age, but can begin much earlier or later, and can include difficulty concentrating and memory lapses, depression, stumbling and clumsiness, involuntary jerking or fidgety movements of the limbs and body, mood swings and personality changes, problems swallowing, speaking and breathing and difficulty moving.

“If your parents has it you have a 50-50 chance of having it too,” said Jo.

“I’ve raised over £2,000 so far but I want to raise as much as I can.

“Family and friends have helped so much with different fundraising events, for which I’m so grateful.

To donate to Jo’s cause, visit https://uk.virginmoneygiving.com/JoanneHague1.