Hey everyone my name
is Stephen Rysen and here is my story:
At the age of five I
was diagnosed with Duchenne Muscular Dystrophy in 1988. Today they are able to
diagnose the patient at the age of two. Hopefully one day it will be done
sooner to get the treatment going more rapidly. Before I was diagnosed with
Duchenne Muscular Dystrophy there were signs I was born with it. I could not
walk properly, could not climb out of boxes if I sat in one, climbing stairs,
losing my balance, could not drive a tricycle and getting tired easily. Between
the age of 5-13 I needed equipment for my feet, for standing, for mobility and
a lifting system. Ankle foot orthotics were used to keep my feet stretched to
allow me to wear shoes. Leg braces were used for me to stand up and to allow me
to walk when I could not walk anymore. It was also used for posture in my back.
The steroids were used to gain some strength and prolong the weakening of
muscles. I stopped walking at the age of nine and at the age of 11. I got power
wheelchair a couple months before my 14th birthday. Ended up getting my feet
and back operated on a few days before my 14th birthday. The scoliosis was
repaired by the back surgery making it 100% straight and the feet being
repaired allowed me to wear shoes in the future without wearing ankle foot
orthotics and to go without ankle foot orthotics. The final years of being a
teenager I ended up on heart medication to improve my heart and to prevent further
deterioration. My heart deterioration was repaired by 50% with the heart
medication. I ended up on nighttime ventilation at the age of 20 and daytime
ventilation at the age of 28. During the day I do breath-stacking exercises
with a manual pump done by my caregivers. I also do breath stacking by
breathing in as much air as possible then exhale. Thanks to research I am one
of the oldest without a tracheostomy at the age of 31 :).
It is tough having
Duchenne Muscular Dystrophy but I have found positives dealing with this
obstacle in my way. I am fortunate to have a supportive mother, sister, father,
caregivers, friends and firefighters to fight muscular dystrophy. At the age of
six, a year after being diagnosed with DMD and moving to the Vancouver area, I
was fortunate enough to make friends who ended up being supportive of me. When
I entered high school I found more supportive friends. This support has allowed
me to go to college to earn a couple of certificates and a diploma.
After going to Muscular
Dystrophy Firefighter Conferences I found out that the firefighters were a
supportive brotherhood & sisterhood for their fellow firefighters and
people with neuromuscular disorders. Even firefighters are good to assist
people with Muscular Dystrophy who are dealing with a loss of a friend from
muscular dystrophy. The firefighter I was thanking for helping out at the boot
drive said we are here for you and we will continue fighting Muscular Dystrophy
with you after I told him I was grieving over the loss of a friend who lost the
battle with Muscular Dystrophy. It actually got me out of the depression from
the grieving I was going through. Firefighters I have met are passionate about
fundraising for Muscular Dystrophy like their profession. I have met loyal
muscular dystrophy fundraising firefighters in person and on Twitter and
Facebook. Their passion for assisting in the fight for Muscular Dystrophy has
motivated me to fundraise since 2008.
I have been
participating in the Safeway Walk for Muscular Dystrophy since 2008 because it
gives me a purpose to life. My fundraising for Muscular Dystrophy Canada
provides people living with Muscular Dystrophy: career programs, support
groups, equipment costs and research to discover breakthroughs and a cure.
Thank you for reading
my story, Stephen Rysen
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