THREE cyclists have just completed a gruelling 1,000 kilometer ride around Lake Ontario to raise money for extra medical help for a two-year-old lad.
Rune Johnstone from Bishopsteignton was born with a rare life limiting genetic disorder, Nemaline Myopathy.
The condition means that the muscles around his skeleton are weak. He is fed through his stomach wall, and is unable to crawl or walk, and cannot independently move from one position to another without assistance
He needs 24 hour care and relies on specialist equipment, such as breathing machine, a wheelchair, mobility seating, walkers and standing frames.
His godfather Marcus Weston, who used to live in Teignmouth but now lives in Toronto, said: ‘Sadly not all of this equipment is provided by the health authorities or local councils, and the family is reliant on fund raising and family support.
‘As with many families with children born with complex care needs, during the covid outbreak we have struggled to get the appropriate levels of assistance. Indeed nothing was made available to us fort he first 20 months of Rune’s life as disability services for children were severely reduced, if not disbanded altogether.
‘Despite all the medical complexities that affect Rune, he is still a very happy boy who has a complete understanding of his external world, and loves to play with his toys and family.
‘His sense of humour is disarming and a beacon of his resilience.’
Dad, Russell, along with Dave Rice of Teignmouth, a friend of the family, completed the ride around the lake which straddles Canada and America, in 10 days.
‘It was very knackering at times because of the extreme heat. We also had about 9000 feet of climbing, and were all exhausted at the end. It took several days to recover fully.
‘But it was all worth it because of the kindness and generosity of so many people,’ said Dave, who is a member of Teign Valley Pedal Bashers.’