A BROTHER is set to stretch himself to the limit by completing a 24km obstacle course while dragging a 24kg weight to raise money for a charity devoted to curing the disease that contributed to his sister’s early death 13 years ago.
Gareth Warne, 37, is taking on the challenge to raise awareness of Rett Syndrome, a rare genetic disorder that often results in other serious physical and mental complications.
Combined, these took his sister Angharad’s life when she was just 17 in 2005.
Gareth, from Southsea, said: ‘Angharad was the most important person in my life and is in my thoughts every day.
‘She taught me so much in her short life, mostly though that often others have it so much harder or have things going on that you don’t realise.
Gareth has set himself several fundraising challenges, with this latest one the fifth of the year.
And he and his wife Harriet opted against wedding gifts and instead asked for donations to Reverse Rett, which raised £1,600 for the charity.
Rett Syndrome is a rare neurological disease that almost exclusively affects girls. Taking hold at a young age the disease ‘effectively traps young girls in their bodies’ by affecting movement, speech, causing seizures and issues with eating.
Due to its rarity, it can often go undiagnosed for years.
‘Our family didn’t know about it for many years, until much later in my sister’s life,’ Gareth said.
‘This is one of the toughest things for parents, particularly mothers. Years of not knowing what was wrong with Angharad, that’s horrible for a parent.
‘This is why raising awareness is as important to me as raising funds. You never know who might know someone affected by Rett Syndrome.
‘Angharad’s death was a huge surprise to us all and took us all a long time to come to terms with, although I’m not sure we ever really will.
‘It was an excruciating experience. No one expects their sibling or child to die that young and to go through the pain of having to arrange the funeral and tell people the news.’
Previous challenges have seen Gareth complete a 22-mile run through Snowdonia, up Mount Snowdon and back down again. For 2018 he wanted to dedicate the year to these impressive feats.
‘The more I thought about it, whilst the one-off events are very good, you’ve got a very short period of time really to capture people’s imagination,’ he said.
Gareth will be completing his latest challenge on November 18 and is less than £500 away from his £3,000 target for the year.