MDF Magazine Newsletter Issue 57 December 2018

People
Living with
Congenital Myopathy
By Lavinia Petersen
someone to help me as my legs were not strong
enough for me to move around on my own. I loved
going to school, learning and meeting new friends.
At the age of 12 years (April 1998) I started walking
on my toes as my ligaments were short and I had to
undergo surgery on my legs. I was out of school for
approximately six weeks. During that period I felt so
helpless. In June of the same year I went to see an
orthopaedic surgeon for my scoliosis. Consequently
a spinal brace was constructed to control my spinal
deformity. I hated every minute of wearing it, but
I had no choice but to do so. I had to wear it to
school, where the children teased me, and I had to
sleep with it on. The only time I could take it off was
when I washed myself. I was in between the Red
Cross Hospital and Medi-Clinic, where I was treated
by three specialists.
I am Lavinia Petersen from Mossel Bay, a 31-yearold
woman who was diagnosed with congenital
myopathy, which is a muscular dystrophy (MD) that
affects the muscles from birth. At the age of 1 year
I started showing signs of MD when I frequently
fell on my forehead. My parents, Ivan and Belinda
Petersen, took me to a paediatrician in George.
The doctor suspected that I had some sort of MD
and he referred me to The Red Cross Children’s
Hospital, where a muscle biopsy confirmed that I had
congenital myopathy. The doctor told my parents
that I would only live until the age of 9 years; what a
shock that must have been for my parents. I had to
visit Red Cross Hospital every year for check-ups.
As time went by I had to go to school. My parents
were told by the teachers to put me in a school
for children with special needs, but my mother
refused and I was allowed to remain at the school
I was at. I had my challenges at school, especially
when climbing steps to attend classes. I always had
When I started attending high school in 1999, my
mother went to the principal to arrange that I have
classes in the same block because I could not walk
far and climb so many steps. One time at school
during break a friend asked me: “Are you not angry
at God for making you go through all these things,
being disabled?” I answered: “No, I’m not because
God has a reason for making me this way and he
has a purpose for me being here.” She said that
she would have been angry at God. There was a
time when I wanted to leave school because I could
not cope with the workload, but God gave me the
strength to go to school each day.
In June 2001, I had another operation on the back
of my neck muscles. The doctor at Medi-Clinic
explained that it would be a long procedure and that
my parents should remain calm when they saw me.
When the nurses pushed me out of the operating
room and into ICU, my mother collapsed when she
saw me because I had a brace on with four screws
in my head. I still have the scars of this operation.
I had a lot of support from my family, teachers and
friends. I could not attend school for six months.
I could not walk alone or wash myself properly or
wear proper clothes. During the night I had to call
my parents to help turn me over on my sides. I got
so tired of being helpless that I cried at times. My
mom had to leave her work during this time to take
care of me.
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