Mark
DeBow
Assignment
2
I
believe in miracles. My eighteen year old daughter, McKenzie, is living proof.
You see, she was born with a rare genetic skin disorder called Epidermolysis
Bullosa. EB causes her skin, with repeated friction, to blister and peel. Her epidermis
(outer skin) doesn’t adhere well to her dermis. Despite being born with the
doctor’s fingerprints on her tiny head, and feet so abraded by blisters that
they resembled raw meat, she’s a thriving, successful, and intelligent young
woman. Mostly she’s a strong and spirited survivor.
As soon as McKenzie was born, the
hospital personnel whisked her away to the Neo-Natal Intensive Care Unit (NICU).
Alarmingly, the delivery doc wasn’t able to tell us what was wrong with our
newborn child, and she was worried about infection and the unknown. Our family pediatrician,
Dr. Fickenscher, was the first to give us a diagnosis. He recalled a child born
with similar symptoms when he was a young intern in the service.
After a
biopsy and a week in the NICU, my wife Karlyn and I carried our baby home on a
sheepskin blanket. We carried her everywhere on that blanket. As instructed, we painfully popped blisters
with a sterile needle, carefully bandaged her, and bathed her with loving
attention. It broke our hearts to see these bandages caused even more blisters.
We couldn’t dress her in all the adorable outfits from relatives and baby
showers. We used Muppet Baby gloves to protect her from rubbing her eyes and causing
more trauma. Karlyn had a difficult time getting McKenzie to nurse. She wasn’t
gaining weight which worried her dietitian mother and me. It seemed like
everything we did was hopeless.
When she
was five weeks old and hovering around her birth weight, we visited one of only
four EB clinics in the nation- the University of Washington Children’s Hospital.
The dermatologist was Dr. Virginia Sybert. I will never forget Dr. Sybert
because she was the first person to give us hope. She was our angel cloaked in
a white lab coat. She believed that McKenzie’s form of EB was a simplex variety
called Dowling Meara. The odds of this genetic mutation were one in a million,
just like my daughter. Unlike dystrophic EB, Dowling Meara sufferers get better,
especially after the first year, and have minimal scarring. We were given an
enormous amount of information, but two things the specialist told us I’ll
never forget: She was in contact with twenty year old boy, who had EB Dowling
Meara, and she described him as a “stud” whose only difficulty was blistering
caused by his ski boots. Secondly, she assured us that McKenzie would walk to
kindergarten. The biopsy completed earlier confirmed Dr. Sybert’s diagnosis. We
were ecstatic!
As
parents of a special child, we endured impolite questions and stares. Small
children with beautiful skin would innocently inquire about McKenzie’s
condition. Once an especially rude woman at Safeway asked about our child. I
briefly explained EB to her, and she blurted without thinking, “Oh, thank
goodness, I thought she’d been attacked by dogs.” We didn’t know if we should
laugh or cry. Gallows humor was prescribed by our friends, Mike and Connie,
themselves parents of a special child. They told us to keep a list of all the
insensitive remarks we heard. They also related that we’d just unwittingly joined
the club nobody wants to be in- the Random Genetic Mutation Club.
Things
did get better though. We were put in touch with a support organization. (DebRA) With the help of others, we learned how to treat this
awful disorder. We ordered expensive first aid wrap made especially for burn
victims, fed her high calorie formula, and dressed her in designer cotton
clothing with no elastic. McKenzie’s three year old brother, Matthew, was so
kind and gentle. He invented the “Gently Hug” and tagged her with the nickname
“Blister Sister”. We developed a regimen of care, bandaging and bathing twice a
day. The first year was terribly difficult with blisters, eating issues (though
she loved soft and gooey Cinnabons), and constant concern about infection. She
never really crawled, because we were always afraid of what the friction of
movement would cause. At fifteen months McKenzie took her first steps, but she
didn’t just walk, she ran, and she’s never stopped running.
To my astonishment, McKenzie was soon playing
soccer, basketball, and t-ball. She didn’t blister easily anymore. When her
neighbor friend, Patrick, learned to ride a bike at age four, five year old
McKenzie was ticked! She taught herself to ride the very next day. We could always
see a strong spirit of competition in everything she attempted. She could also
be very bossy. While playing a basketball game, she yelled at her friend and
teammate, “Lacey, you’ve scored enough.
Now pass me the ball!” Whether it’s Scrabble or soccer, she HATES to lose!
She was a
real grouch if her team lost, and after a rare fourth grade basketball defeat, her
attitude was especially sour. Her head hung down and tears welled in her eyes
as she slowly shuffled out of the gym. My wife was exasperated with her
attitude and snapped, “Well, maybe you’re just too competitive and shouldn’t
play sports anymore.”
“Then what should I do?” a
teary-eyed nine year old sobbed.
“How about art? You’re good at art!” replied her mother.
“What about art CONTESTS?!” asserted my strong-willed
daughter.
She attacks
life as a tiger attacks its prey. She’s determined, dedicated, and driven. She
jumps on largest horse on the carrousel of life, and then reaches out and grabs
the dangling ring of success boldly and bravely.
This gung-ho attitude has been duplicated in the
classroom. She’s had straight A’s throughout middle school and high school with
the exception of one B in Mr. Keenan’s pre-calculus class. Even though the
grade was below her standard, she maintained a mature attitude, but she’s still
a bit peeved that the 89.9 percent wasn’t good enough for an A- or at least a
B+. Now she’s graduated from high school with honors and accolades; Spanish
Immersion Student of the year, Community Service Student of the Year, diplomas
from Sheldon High and the International High School, three college scholarships
including the prestigious Presidential Scholarship to Seattle Pacific
University, and I could continue to brag, but I won’t.
Therefore,
McKenzie, this is my tribute to you. My hats off in awe-inspiring admiration of
you! I’m sure you’ll continue to persevere and succeed. The lessons learned are
numerous. I’ve gained awareness of what it takes to be a survivor and how to
fight back when the odds are stacked against you. You’ve taught me to always do
my best, keep an eye on the ball, and your life will be a home run! Congratulations,
Miraculous McKenzie!
Click below
for more information on EB.
(DebRA- Dystrophic Epidermolysis Bullosa Research Association)