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DMD: BOY HANDS OVER WHEELCHAIR TO FELLOW SUFFERER
Paying it forward CARINA ROUX
tions offered to courier the chair to Johannesburg, but they decided to “keep it local” and contacted MDSA Cape to help find a candidate for the chair in Cape Town. Through the recommendation of a social worker at Paarl School in Brackenfell, the decision was made to donate the chair to one of the school’s learners, Abubakar Jawa (13) from Durbanville. The Jawas, originally from Nigeria, moved to South Africa in 2011 because of their son. Mom Aisha Jawa says when Abu was about 18 months old she knew something was not quite right, but the doctors did not know what it was. At age five Abu was diagnosed as autistic. At age eight Abu showed muscle weakness and was diagnosed with DMD after Aisha took him to Professor Johannes Schoeman, paediatric neurologist at Tygerberg Hospital. After the diagnosis they were referred to the Muscle Disorder Clinic at Red Cross Children’s Hospital, says Aisha. Abu likes to play, enjoys nature, has an interest in geography and is curious, says his mother. ‘‘His teacher always says, ‘he’s her news presenter’.” Aisha says there is a need to raise awareness about Duchenne – also in her country of birth. She says the new chair is much easier to handle as it is lighter and better suited to Abu’s body. Marius ensured all necessary measurements were taken beforehand to make sure it’s a good fit. Aisha admits things are not always easy. Courage is required, but “God would not have given her something that she is not able to handle,’’ she says. The Winslows, who recently cycled the 65km Amashova Cycle Race in Durban with Jason’s race chair hooked to dad’s mountain bike and mom riding along, say for them it is all about making a difference and raising as much awareness as possible. V To page 2.
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ast Wednesday (24 October) Brohnsonn and Christine Winslow flew from Johannesburg to Cape Town for the day with their son, Jason (12), for a very special handover in Goodwood. Jason has Duchenne Muscular Dystrophy (DMD) and is wheelchair-bound since he lost the ability to walk a year and a half ago. Brohnsonn explains DMD is a genetic disorder for which there is no cure yet. “The protein we have in our body to build and repair muscle, dystrophin, they don’t have that. It is a muscle-wasting disease.” He says it starts with the skeletal muscles losing the ability to function properly. The heart (a muscle) also gets affected and Jason is on heart medication. Problems with the heart and lungs end up being fatal, says Brohnsonn. Some DMD sufferers make it to their 20s but they rarely live to 30. “It is 100% fatal. We choose to look at the positives all the time,” he says. “But it is hard … and hard work.” TygerBurger met the Winslows at Solutions Medical and Rehabilitation Suppliers in Goodwood where we were welcomed by owner Marius van Rensburg and representatives of the Muscular Dystrophy Foundation (MDSA) Cape branch – Win van Berg (chairperson) and Vanessa Jordaan (general manager). The Winslows came to Cape Town so that Jason could hand over a wheelchair to another boy affected by DMD. Christine explains Jason has his own Facebook page, “Jason’s Journey with Duchenne”, through which they raise awareness about DMD. Leading up to World Duchenne Awareness Day on 7 September, Jason made a request for people to post photos with red balloons. Marius was so impressed by this awareness campaign that he posted a pledge to donate a wheelchair. Christine says Solu-
Some DMD sufferers make it to their 20s but they rarely live to 30
Back from left: Marius van Rensburg (Solutions Medical), Win van der Berg (MDSA), and Christine and Brohnsonn Winslow. Front: Abubaker Jawa and Jason Winslow. PHOTO: CARINA ROUX
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