Family raising awareness of Juvenile Huntington’s Disease

Jamie Hartley who has Juvenile Huntington's Disease with his mum Kristina, stepdad Mark and his sisters Imogen, Trinity and Anastasia.
Jamie Hartley who has Juvenile Huntington's Disease with his mum Kristina, stepdad Mark and his sisters Imogen, Trinity and Anastasia.

A couple from Blyth whose two teenage sons were both diagnosed with a rare and fatal genetic disorder are raising awareness of the condition.

In January 2008, Kristina and Mark Hartley, of South View, Newsham, received news that no parents should ever have to hear.

Their two sons Jamie and Kyle, at the time aged 13 and 15, had tested positive for Juvenile Huntington’s Disease (JHD), a slowly progressing hereditary disease which causes brain cells to die.

It is a life-limiting genetic disorder for which there is no cure.

It was a diagnosis that Kristina, 37, and stepdad Mark, 40, expected, however.

The tests revealed that the boys both had an aggressive form of JHD, which is why they were displaying symptoms in their early teenage years.

Over the years Jamie, now 18, and Kyle, now 20, have lost certain life skills, such as the ability to swim, ride a bike, run and now they are gradually losing the ability to walk.

Mark said: “It seemed that overnight the boys would be robbed of their ability to do things.

“Kyle ran long distance for the county now he can’t run at all.

“He was an excellent swimmer and became a junior lifeguard by the age of 12 but then a year later I had to teach him to swim again.

“For Jamie, he lost his ability to walk overnight.

“He was getting confused about rational things and started behaving inappropriately in social situations and he had no perception of danger.

“He has a camera in his room so we can monitor him at night as he needs help getting to the toilet and is a danger to himself.

“He can injure himself on things you would never dream of.”

The family are now raising awareness about the condition and encouraging more people to support Genetic Disorder UK’s Jeans for Genes day on September 20, which invites people to wear their jeans to work or school for the day in return for a donation.

A number of charities and support groups who care for children affected by a genetic disorder will benefit from the funds raised on the day, including the Huntington’s Disease Association (HDA) and the Huntington’s Disease Youth Organisation (HDYO).

To sign-up for a fundraising pack visit www.jeansforgenesday.org

For more information on HDA visit hda.org.uk or for more on HDYO visit hdyo.org