My Favorite PCA

by Christina Medvescek on March 1, 2007 - 11:32am

QUEST Vol. 14, No. 2

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.

And for more about finding and managing PCAs, see Quest, March 2007, "Where Are All the PCAs?" and “Is Your PCA Driving You Crazy?”


Michelle Butler with Isabella
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 1 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!

Ron Steenbruggen with Matt Eddy
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

Farihah Mehmud with her PCA at school, Mrs. Battochio
Farihah Mehmud with her PCA at school, Mrs. Kimberley Battochio

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.

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 babysits 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

Robyn Guitierrez and Miss Debbie
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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