Last 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 Solutions 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.
Jason was only diagnosed when he was six years old.
Brohnsonn says they were living in the Seychelles at the time where they still
have a business.
“The doctors saw all the key identifiers, but failed to
diagnose it.” They made a decision to move back to SA in 2013 as it was
difficult for Jason to get around.
Christine says many times there will be delays in early
developmental milestones such as sitting, walking and talking.
Speech delay and/or the inability to keep up with peers will
often be the first signs of DMD.
Symptoms to look for include:
. Gower’s Manoeuvre: needs help getting up from the floor,
or walks hands up legs in order to stand;
. Has a hard time lifting the head or has a weak neck;
. Is not walking by 15 months;
. Has a hard time walking, running or climbing stairs;
. Not speaking as well as other children their age;
. Has calves that look bigger than normal
(pseudohypertrophy);
. Walks with legs apart;
. Walks on toes and/or waddles; and
. Walks with chest pointed out (or has a swayback,
saddleback, or arched back).
What is your opinion on this article? Let us know at
briewe@tygerburger.co.za.
