MDF Magazine Newsletter Issue 60 December 2019

People
I was diagnosed with a rare combination of Becker
muscular dystrophy and rigid spine syndrome at a
young age. I had a normal childhood and young
adult life. At the time this disease was just a name
as it would lie dormant for about 25 years and then
manifest with full force.
It started with my struggling to climb up steps, walking
with a more pronounced gait, having stiff or rigid
neck and spine muscles, and losing breath easily.
Because of severe endometriosis, I was told that
the chances of my falling pregnant without in vitro
fertilisation would be very slim. Yet at 29 our
baby boy was born. A gift of God! This is when I
started noticing the effects of my muscular disease
in a more real way. Staying in a duplex at the time,
I found stairs more and more of a challenge. I could
not carry Joshua up and down them as I did not have
the muscle strength. I would tie him to my body with
a wrap as I slowly dragged myself up and down
between the nursery, kitchen and lounge. Many days
I would spend downstairs, not having the strength to
make it up the stairs. I learned to walk with God,
not leaning on my own strength but each and every
day, with full trust and confidence and reliance on
His goodness, strength and grace, pressing on to
finish the race set before me. But this was nothing
compared to what was to come.
I was able to work till the age of 40. Battling more
with mobility like walking and climbing stairs, I
found life a bit more challenging. Because of MD,
my spine, neck and respiratory muscles were
taking more strain. Because of the muscles going
rigid and my ribcage now being fused together,
which did not allow for them to expand and contract
during breathing, my lungs had only a 30% oxygen
capacity. My body did not have enough oxygen, and
my heart took strain. I suffered from sleep apnoea.
I was tired all the time, I moved with great difficulty
and I had numerous blackouts, which also resulted
in my having a car accident.
In July 2011 (I was 36 years old) I got sick. It all
started with the flu, then bronchitis. On Saturday 23
July 2011 I was booked into the Morningside clinic to
receive supplementary oxygen. On Sunday 24 July
I aspirated. My heart stopped beating and I stopped
breathing. For two hours the doctors worked
fervently, performing heart massages, and bagged
me to keep me alive. They could not get all the pipes
into my airway through my mouth and performed
an emergency tracheotomy. I was diagnosed with
double pneumonia and septicaemia. Not only was
I not breathing on my own, but my heart rate was
around 160 and I had fever way above 40 degrees.
Things did not look good. For the next nine days I
was in an induced coma. I was on life support and
had pipes and tubes everywhere. I started bleeding
through my nose, ears and mouth. And blood transfusions
were started on a daily basis. Through all
this my husband, John, mom, dad, sisters and close
friends were at my side all the time. People were praying.
E-mails were sent out and more prayer chains
started. My mom and dad went through a very
difficult and emotional time.
When I came out of the coma I could not speak
because of the tracheotomy and could not move
my body because of the loss of all muscle strength.
There was little chance of my breathing on my own
again. I would spend 45 days in ICU, in isolation. I
could not read the Word, and in this time the church,
family and friends who stood in the gap carried me
in prayer. My friend Sue came to visit on a regular
basis. She anointed my room and during every visit
we partook of communion and trusted God for healing.
Every day there was a slight improvement. I had
physiotherapy twice a day and I had to learn to walk
again. This was so hard. I could not turn myself
around in bed and had very little body movement.
I also had to learn to write again as the only way I
could communicate was by writing words on a piece
of paper.
But we serve a God of the impossible, and
although my faith was so small God remained
faithful. Through it all I learnt that God is our only
Refuge and Strength, and it does not matter who
you are or what you have in this life, what matters
is that you know the Lord and have an intimate
relationship with Him. Neither life nor death can
separate us from HIS love.