A South African man is running a 100-mile race to raise funds to help a young boy with Congenital Muscular Dystrophy live his best life.
Michael Dickerson (42) from Hoedspruit Limpopo was participating in a trail running series when he met Daniël Otto (6), a boy suffering from Congenital Muscular Dystrophy (CMD).
CMD is a group of muscle diseases that occur at birth or during early infancy and is characterized by diminished muscle tone according to rarediseases.org.
With progressive muscle weakness, a common symptom of CMD, Daniel has lost the ability to walk and stand on his own, says Marina Otto (39), Daniel’s mom.
“It is impossible for Daniel to sit upright by himself, he is also unable to climb, crawl, walk, run or jump like regular kids and all he wants is to be just like them. But despite his many challenges he still has a playful spirit and is a really smart young man” – says Marina
When Michael, met Daniel, he was inspired by his positivity and bravery. Learning about his condition and the pressure his family is under to cover his extensive medical costs as their medical aid doesn’t cover the specialised care, Michael wanted to help the family.
Hoping to raise R161 000, Michael set up a campaign on donations based crowdfunding platform, BackaBuddy and pledged to participate in the Karkloof 100, a 161 km run taking place on the 21 September 2018 in Kwa-Zulu Natal.
The ‘non-stop’ trail run, which is in its second year is the ultimate test of human endurance and participants are given a total of 36 hours to complete the course. Last year only 25 out of 46 participants managed to complete the course successfully.
“I decided to take on this race in honour of Daniel as he doesn’t have the ability or privilege to run and enjoy the freedom he deserves. The Karkloof 100 is symbolic of the struggles he has faced in his short life and the perseverance he shows on a daily basis. I hope to be as brave as him one day” – says Michael
The campaign went live on the 23 of July 2018 and has thus far raised 10% of the goal, R 16 550.57 with contributions from 21 donors.
Funds raised through the ‘Lion Heart’ BackaBuddy campaign will be used to enhance Daniel’s quality of life and purchase specialized equipment to help improve Daniël’s mobility.
“I can’t imagine what this family is going through and the pressure they must feel as their medical bills become astronomically more expensive. I hope the public will support my BackaBuddy campaign for this tenacious young man” – says Michael
Michael will be carrying Daniel’s photo with him for courage as he takes on the Karkloof 100. When he expressing his pre-race nerves to Daniël, he was met with the perfect response.
“You don’t have to be scared, Michael, because I am not scared at all” said Daniël
Daniël still has a chance of a ‘normal’ life and lifespan and depending on increased mobility, doctors might be able to elongate his tendons in an attempt to get him walking again.