My Favorite PCA
by Christina Medvescek
We hold a special place in our hearts for those who
help us with housework, school work, dressing, eating,
toileting, breathing ... in short, our personal care
assistants (PCAs).
Often such assistance comes from our closest family
members and friends, and they deserve at least a
bouquet of flowers a day, plus a medal. Other PCAs
are at first strangers who are being paid to help,
but who provide a quality of care and service that
goes above and beyond their job descriptions.
Some PCAs aren’t even human -- they’re
animals, or even a walking stick or computer.
If you’d like to recognize those who make
your life not only easier but brighter, send a short
essay and a photo to “Quest Favorite PCA”
at publications@mdausa.org, or mail to:
Favorite PCA
MDA Publications Department
3300 E. Sunrise Drive
Tucson, AZ 85718
And for more about finding and managing PCAs, see
Quest, March 2007, "Where Are All the PCA's?"
and “Is Your PCA Driving You Crazy?”
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| Michelle Butler with Isabella |
Above and Beyond
I would like to take this opportunity to nominate
and recognize Michelle Butler as my Favorite PCA.
Michelle has been the home care nurse for my daughter,
Isabella for the last 10 months. Isabella is a beautiful
and bright 3-year-old little girl with Type I Spinal
Muscular Atrophy (SMA).
Michelle has shown compassionate, loving care,
above and beyond the call of duty. She has quickly
became a true friend and an invaluable part of our
family.
Joanna Kurek
Norwalk, Conn.
Life-Changing Dedication
I am writing in regard to my boyfriend, Matt Eddy,
and Ron Steenbruggen, the man who saved his life!
Matt, from Lynn, Mass., is 30 years old and has
Duchenne muscular dystrophy (DMD). Because of his
progressive disability he is in a wheelchair and
dependent on a ventilator to breathe. Matt was hospitalized
in 2000 and given a tracheotomy for breathing. At
that time, he was given six months to live!
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| Matt
Eddy (right) with Ron Steenbruggen |
While in the hospital, Matt met Ron, a respiratory
therapist. Matt and Ron became good friends. Matt,
then 23, wanted nothing more than to get out of
the hospital. Unfortunately, given his significant
medical needs, Matt's family could no longer care
for him. Thus, he was going to be moved to a state
hospital where he would live out the remainder of
his life (which was expected to be very short).
Out of a love for Matt, Ron refused to allow this
to happen. Instead, he helped Matt obtain a subsidized
apartment and took on the responsibility for most
of his care. Matt lived in that apartment for four
years. During this time, Ron was Matt's primary
source for monetary support and medical care. Ron
bought Matt an adapted van and took him on many
vacations to Florida.
When the subsidized apartment could no longer meet
Matt's accessibility needs, Ron bought a house and
modified it. He continues to take care of Matt each
day.
Ron has done all of this for absolutely nothing
in return. He’s had numerous struggles along
the way, including losing his own house, all so
that Matt could have a better life!
Thanks to Ron, Matt not only has outlived what
doctors predicted, but also the life expectancy
of people with DMD.
Now, Ron and Matt want to help others in similar
situations, and have started Matt's
Place to do so.
Robyn Powell
Medfield, Mass.
A Friend in Times of Trouble I
am Farihah Mehmud. Since I have type
2 spinal muscular atrophy (SMA), I got an assistant
at school, named Mrs. Kimberley Battochio. She turned
out to be a very helpful person.
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| Farihah
Mehmud with her PCA at school, Mrs. Kimberley
Battochio |
For example, last year when she heard that I broke
my leg, she dropped everything and came flying over,
and helped my mom to carry me to our car to go to
the hospital. Later, she helped my mom get me to
physical therapy. She also made some important phone
calls to the insurance company and about transportation,
when my mom was very upset about my broken leg.
Besides school, sometimes she baby-sits me and
takes me outside, like to the movies, a concert,
the library and shopping.
She loves and cares for me so much. I love Mrs.
Battochio.
Farihah Mehmud, 10 years old
Danbury, Conn.
Aide Gave Her a Great Start
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| Robyn and Miss Debbie |
My 4-year-old daughter Robyn, who has Ullrich
congenital muscular dystrophy, had a wonderful
assistant at her preschool last year named Debbie
Della Maggiore. Miss Debbie made Robyn’s first
year in school a fun, encouraging and positive experience.
She has a beautiful spirit and smile and we appreciate
her more than words can say. She will always hold
a special place in our hearts.
Thank you, Miss Debbie.
Aarica Guitierrez
San Jose, Calif.
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