A Chester man (pictured) is taking on the ‘Les Sept Majeurs’ (Seven Major Peaks) cycling challenge in France this weekend.
Greg Jones’ mission is to help raise funds for his school friend Alex Braun’s nine-year-old son Eddie, who has a rare genetic condition.
Eddie suffers from Gould Syndrome (a mutation in the COL4a2 gene) which causes a weakness of small blood vessels which in turn led to a bleed on his brain before he was born. He is registered blind, has cerebral palsy which affects all four limbs and is unable to walk. He also has severe epilepsy and a profound learning disability.
Greg’s challenge takes in seven mountains with a combined elevation of 12,000 metres and a distance of 360km. He and his friend Wilson Renwick (44) hope to beat the current record of 20 hours and 30 minutes.
Alex, CEO of charity Time Away who lives in Chester with his wife Ilmarie and son Thomas (13) said: “Even though Eddie’s movement is very restricted in many ways, he is also typical of a child of his age in that he loves being as active as possible and being outside. However, as he gets bigger and heavier it’s becoming harder for him to access regular play equipment and services.
“Our current fundraising aim is for an outdoor hoist, and we’d like to create a covered area for a trampoline and swing where he can get outside whatever the weather.
“We love going for family bike rides and have a specialised trailer for Eddie, but as he gets bigger and heavier that becomes more of a challenge, so we’re considering an electric bike.”
Eddie used to have up to 300 seizures a day and would end up in hospital around every three months. For the last seven years, his parents have used medicinal cannabis at a cost of around £1000 per month, to help control these seizures and also drastically reduce how often he has to be admitted to hospital.
Alex added: “Greg and I have been friends for a long time and I’m deeply touched that he’s taking on this challenge.”
Greg said: ‘I’m really happy to be helping Al, Eddie and his family and am looking forward to the challenge. Eddie is happiest when he is outside and experiencing Zero Gravity – as a thrill seeker and skydiver myself, we have this in common!’
“I do a lot of cycling but this is the biggest one I’ve taken on by a long way. Each of the seven mountains is over 2,000 metres high, which is double the height of Snowdon. One climb is almost 3,000m. We will do this seven times going straight up and down with no nice flat to recover on, so we have nicknamed this challenge ‘The Toblerone.”
The Braun family is being supported by children’s charity Tree of Hope which helps families fundraise for children like Eddie with healthcare needs where the NHS can’t support, and provides charity status to benefit from gift aid, corporate support whilst also providing donor reassurance.
Becky Andrew, Tree of Hope CEO said: “It’s always lovely to hear about a community getting behind a family in the way that is clearly happening here. We wish Greg and Wilson lots of luck for their challenge and all the best to the Braun family for their future fundraising.”
To sponsor Greg and Wilson visit: https://www.justgiving.com/fundraising/The-toblerone2024
