Home' The Bunyip : August 13th 2014 Contents Page 12 "THE BUNYIP" GAWLER, Wednesday, August 13, 2014
LITTLE Mack Darlington is
just like any other 16-month-
old boy, with his cheeky per-
sonality, adorable smile and
fascination with iPads.
However, before Mack was
born, he was diagnosed with Spi-
nal Muscular Atrophy Type 1, a
rare genetic neuromuscular dis-
ease where the body cannot sit or
Tragically, there is no cure or
treatment available for the disease,
meaning Mack spends his days on
his back attached to a machine
that supports his breathing.
He also eats through a feeding
The disease is the number-one
genetic killer of children aged un-
der two and Mack has been given
a limited life span, but he is a bat-
Mack's mother Sharyn Colledge
said her son is a cheeky and funny
character who has his own way of
"He's so sweet," Sharyn said.
"He's very expressive with his
eyes; because he can't move physi-
cally, he uses his eyes to express
"If he doesn't like something,
he'll roll his eyes at you."
Not surprisingly, caring for Mack
is a full-time job and is expensive
and challenging for Sharyn and
partner Gareth Darlington, who
also lost their daughter Madison
in 2008 to the same condition.
The Freeling family has al-
most complete control of
Mack's care at their home and
the Women's and Children's
Hospital is only a phone call
away if there are any issues.
Along with eight-year-old Ma-
son, they are doing the best they
can, but, frustratingly, they lack
resources to make Mack's life even
"We don't get a lot of time to
do anything really ourselves, so I
guess we have to rely on other peo-
ple to help us out," Sharyn said.
"We're lucky to have the sup-
port of people around us."
The family relies on family and
friends to take Mason to school,
while Sharyn cares for Mack.
Gareth travels to Adelaide for
work on weekdays and provides
the family with its only source of
The family is unable to afford
another car, which needs to con-
tain the Australian safety standards
to enable Mack to be a passenger
and, at this time, he can only be
transported in an ambulance.
The family is also unable
to finish paving their home,
meaning Mack must stay in-
side most days.
"It's hard to get him out, he's
practically always on the trolley,"
"We can't just pick him up and
walk around with him, so getting
him out the door is tricky.
"If we had an area outside, it
would be so much easier to take
him out there."
Mack's journey has touched
many in the community and now
with the support of family and
friends, an appeal has been estab-
lished to raise about $15,000 for
his ongoing care.
The appeal has currently raised
$5000 and the proceeds will go to-
wards a second-hand van equipped
to accommodate Mack's special-
ised wheelchair, a new paved area
at the family's home and a special-
ised baby formula sourced from
the United States.
August is also Spinal Muscular
Atrophy awareness month and the
family is hoping to have T-shirts
created for a fundraiser.
Sharyn said Mack's condition
has become a part of everyday life,
but the family remains positive,
even though the uncertainty of his
well-being remains on their minds
"Day in and day out we just
don't know what's going to hap-
pen; I mean anything can hap-
pen," Sharyn said.
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expressive with his
eyes; because he can't
move physically, he
uses his eyes to express
himself. If he doesn't
like something, he'll
roll his eyes at you.
Mack attached to the machine that supports his breathing.
See what is
-- Page 28
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