deborah
This is my mother, Deborah. She was born on June 28,1954 in
Aiken, South Carolina. She was the first born child of my grandparents,
with a brother and then a sister to follow. After being diagnosed with
Sturge-Weber as an infant, she spent most of her childhood in and out
of hospitals and doctor offices. So she did not get to graduate high
school. Soon my mom met a man by the name of Leslie and they fell
in love. They married on September 30, 1973. On June 21, 1974, my
brother was born with me to follow 3 years later and then my sister 7
years after me.
I grew up never thinking much of my mom’s condition. I never really noticed her port
wine stain, except for when new friends would ask me. I only remember watching her
run a family and run our home just like any other mother. In 2000, my mother had a
stroke. I remembered being very scared that I would lose her or that she would not be
the same. It took her a few months to start walking like she used to and to start talking
without slurring, but she overcame the stroke. As my grandmother started to become
disabled, the family made a decision to move my grandmother into a home that was a
“I grew up never thinking much of my
mom’s condition. I never really noticed
her port wine stain, except for when new
friends would ask me. I only remember
watching her run a family and run our
home just like any other mother.”
few feet behind my parents home. My mother spent the next few years, 24 hours a day,
caring for my grandmother who had Parkinson’s. She also continue to take care of her
own home and my father.
With everything my mother experienced with Sturge-Weber and having 3 kids and
then caring for her elderly mother, she has proven to be one of the strongest women
in the world. She didn’t graduate from high school with a diploma or go to college, but
she is the smartest woman I know. She has learned to face adversity in her life and has
taught her children how to see the world in a different view than most kids learn growing
up. She taught her children that even though you may have a medical condition that can
affect every part of your life, don’t let it. You are only as weak as you allow your medical
condition to make you. My mother, Deborah, is a strong, smart, loving and brave
woman. God bless her and God bless all the people with Sturge-Weber syndrome.
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The Sturge-Weber Foundation