CMD is a group of muscle diseases that occur at birth or during early infancy and is characterised by diminished muscle tone, according to rarediseases.org.
With progressive muscle weakness, a common symptom of CMD, Danië* has lost the ability to walk and stand on his own, says Marina Otto, Danië* ’s mom.
“It is impossible for Danië*, 6, 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 Dickerson.
However, when Dickerson, 42, met Danië* , 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 without medical aid, Dickerson wanted to help the family.
Hoping to raise R161000, Dickerson set up a campaign on donations based crowdfunding platform, BackaBuddy and pledged to participate in the Karkloof 100, a 161km run taking place on September 21, in KwaZulu Natal.
The “non-stop” trail run, which is in it’s 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 Danië* 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 Dickerson.
The campaign went live on July 23, and has thus far raised R16550.57 with contributions from 21 donors.
Funds raised through the “Lion Heart” BackaBuddy campaign will be used to enhance Danië* ’s quality of life and purchase specialised equipment to help improve Danië* ’s mobility.