Going the distance for CMD
Hoedspruit resident Michael Dickerson, inspired by Daniël’s positivity and bravery, decided to embark on the ultimate challenge and raise funds for Daniël at the same time.
Over the past weekend, Michael took part in the Karkloof 100, a 161 km run in Kwa-Zulu Natal.
Michael completed the gruelling challenge in 24 hours, 21 minutes and 2 seconds. His wife, Lindsey, spoke to the HOEDSPRUIT HERALD about the challenge.
“It was mountainous and technical, he had to run 50 miles and then turn around and come back the same route. The weather changed on his way back, there was rain and hail, and this was psychologically hammering on Michael.”
Of the 111 entries, 94 competitors started the run and only 77 completed it. Michael finished 20th out of all the competitors.
On the return leg, pacers took it in turns to run with Michael. Lindsey said this made a huge difference for Michael, with someone to help, it was easier to find the markers and stick to the route back. “There was lots of slipping and climbing, the markers were difficult to see.”
Michael has previously run the Comrades and various other running endurance events. After meeting Daniël when Michael was competing in a local trail running series, he felt compelled to assist the family, “The two ideas just came together, he wanted to do something epic and he wanted to help Daniël,” says Lindsey.
“Michael kept a laminated photo of Daniël in his pocket during the run and when he felt like giving in, he used it to remind him of why he is doing what he is doing. He didn’t want to let Daniël down.”
At the time of going to press, Michael had raised R31, 000. This is enough to cover the much needed braces for Daniël.
https://www.backabuddy.co.za/champion/project/daniel-the-lion-heart
Raising a lionheart – Daniël’s mother’s response…
Marina Otto, the mother of young Daniël expressed her appreciation for all of the fundraising for her son, “We are definitely overwhelmed and grateful. It is a huge relief to know that we can afford some of the expenses.”
Marina told the HOEDSPRUIT HERALD that it has been incredible for her and their family to have so many willing people approach them and want to fund-raise for Daniël.
He was diagnosed with Congenital Muscular Dystrophy (CMD) when he was two and a half years old, but it still came as a complete shock to his parents when he literally stopped walking and standing upright himself overnight.
CMD is a group of muscle diseases that occur at birth (congenital) or during early infancy. There is currently no cure for CMD.
Daniël needs to visit a physiotherapist weekly and a paediatric neurologist regularly. The family do have a medical aid but such treatments are seen as a luxury and so the family often have huge medical bills to pay.
“We want the best for him and we would like to upgrade his equipment,” says Marina. With the money raised by Troy and Lilly, the family can afford a new standing frame and with the money raised thus far from Michael Dickerson, they can afford new braces for Daniël to sleep in.
The braces help to prevent Daniël’s muscles and tendons in his arms and legs from contracting whilst he sleeps.
Marina says that Daniël is fascinated by Troy and Lilly’s, and Michael’s adventures, although he doesn’t necessarily completely understand.
“We raised him as a lionheart, he loves his life. He understands that he needs these things and he is extremely interested in what Troy and Lilly and Michael are doing but he hasn’t really made the connection. We raise him as a positive child,” Marina says.
