AN inspirational 16-year-old British boy is running every day for a year to raise funds and awareness for Battens Disease in memory of his cousin who tragically died from this condition four years ago when she was just 13. 

Sam Clarke is covering between five and 20 kilometers every day across mainland Spain and then Mallorca, Italy, Canada and the UK. 

Battens Disease is a life-limiting genetic disease of the nervous system and usually starts affecting children at around the age of four when their speech, movement and cognitive skills start to regress.

Life expectancy is usually pre-teen and currently there is no treatment to reverse the symptoms. 

Research is being undertaken by scientists, but more funding is needed to get the breakthrough those affected by it and their families so desperately need.

Sam’s mum Sally Clarke told the Olive Press: “We are an incredibly close family and you never think something like this is going to happen to you.

“One of the problems is it is very hard to diagnose and treat, in the end my sister was working closely with doctors and nurses on care for Tia and other children suffering from Battens’.

“We want to raise funds for the Chestnut Tree House who cared for Tia, but as important is raising awareness of this condition.”

Sam started his incredible journey on January 17 and has run through rivers, country trails and along beaches.

INSPIRATION: Sam’s Instagram page

He records a video diary every step of the way.

Most recently, he finished first in yesterday’s 5k Torremolinos Colour Run, where he finished first in a speedy 22 minutes. 

Last week he also ran up the Rock of Gibraltar, in the Top of the Rock Race, in which he finished first for his age group.

“I wanted to do this for Tia, she was so lively and full of mischief. I think she would approve. I run with a necklace that has her picture.”

So far Sam has raised €1,000 through his Just Giving page.

“If everyone donated a euro it would make such a difference.”

To see Sam’s video diary and to find out how to donate, click HERE

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