Muscular Dystrophy Association

This post is the second in a series following previously published Diagnosis And Death Certificate. All I could feel was an urgency to go to the Muscular Dystrophy Association office. The ride from the pediatric orthopedic surgeon’s appointment to pick Hayes up from the Mother’s Day Out program was one of those nightmarish reality checks.

Not knowing how quickly Hayes would lose the skills he had would be our daily lives. Our son would die a day at a time from a disease without a cure. Pete and I would have to stand helplessly by, even as his parents, be powerless to save him from the specialist’s inevitable forecast.

We would be lucky to have him in our lives for only 15 more years. Every doubt exploded in our hearts and minds that we would not be experienced enough parents or strong enough to survive the overwhelming news.

A Ride Like None Other

The ride to pick up Hayes was silent because you cannot speak if you cannot breathe from shock. But I know we were both thinking, Muscular Dystrophy? Why Hayes? We pulled ourselves together when we somehow safely arrived at Asbury United Methodist Church. I knew from that day forward I would not be able to keep track of my husband’s tears any longer.

Pete and I did our best to greet our son as if nothing life-changing had happened. “Mama, Daddy.” Hayes ran towards us with outstretched arms, anticipating a three-way hug. One thing had not changed. Hayes was more than a medical diagnosis, and we still wanted our son to have the happiest and most normal life possible. And we were still the Fun Fullers.

I believe in exploring all options before making medical decisions-especially where children are involved. My gut told me there was something else that Pete and I did not know about and the pediatric orthopedic surgeon had not mentioned.

Joan MDA Stranger And Angel

The next day, in numb mode, I depleted numerous tissues on the way to the local Muscular Dystrophy office. My mission was to gather as much information as possible about Duchenne muscular dystrophy.

A woman in her late thirties greeted me with a warm smile as I walked into the modest office. “Hi. My name is Joan.” “Hi. I’m Marilyn Fuller. I called earlier seeking information about muscular dystrophy.” She invited me into her office and quietly closed the door.

I detailed the medical events that led me to the Muscular Dystrophy Association. Joan listened carefully to the information I shared with her and instinctively knew when to push the tissue box closer to my puffy eyes and shaking hands.

Blood Deletion Analysis Test

“Marilyn, there is a less invasive procedure than the calf muscle biopsy. It is a blood deletion analysis test. A blood sample from Hayes will be drawn at the University of New Mexico Hospital and sent to Baylor College of Medicine in Houston, Texas, for a DNA Diagnostic Report.”

Since Hayes had already been seen by a pediatric orthopedic specialist and had a suspected diagnosis of Duchenne, one of MDA’s covered neurological diseases, MDA would also pay for the test. What a miracle! My family’s first experience with MDA not only prevented our son from undergoing the stress of a painful surgery but also saved us a considerable amount of money.

Joan scheduled an appointment at the University of New Mexico for Hayes’ blood test and an appointment for him at the MDA Clinic. She also sent me home with a few brochures that were written in a language I could understand about the progression of muscular dystrophy, as well as the medical and emotional support services that MDA provides to individuals and families. I never forgot Joan, a stranger, and angel, who in every way modeled the Muscular Dystrophy Association’s mantra, “People help MDA because MDA helps people.”

The tunnel of grief seemed less deep and not so dark after my time at the MDA office. I was so glad I listened to my gut!

Jerry Lewis, Entertainer, And Humanitarian

When I left the MDA office, I wondered who Jerry Lewis initially knew that got him so intently involved over the decades to try to find a cure for many life-changing and life-threatening diseases.

He was the National Chairman of MDA for more than five decades and helped the organization turn muscular dystrophy into a household term. Because of his career in the motion picture industry, he had many Hollywood celebrity connections who volunteered their time and talents to appear on the telethon to raise money to give hope that cures could be found for neuromuscular diseases.

As I wrote about in Diagnosis And Death Certificate, I knew about muscular dystrophy because of Jerry Lewis MDA Telethon that my mom, dad, and sis watched every Labor Day Weekend.

The American Medical Association honored Jerry Lewis and MDA with its lifetime Achievement Award for significant and lasting humanitarian efforts.

The Academy of Motion Picture Arts and Sciences presented him with the Jean Hersholt Humanitarian Award for his humanitarian efforts, bringing notable credit to the industry.

These are only two of many honors he received for a lifetime of trying to help the most medically vulnerable children, adults, and families caring for them 24/7.

When I watched the telethon as a kid, I thought Jerry Lewis must be so kind to care about so many people he didn’t even know.

Informed Medical Decisions

When I returned home, I read the brochures about Duchenne Muscular Dystrophy (DMD) and the Muscular Dystrophy Association. I learned:

• DMD is a genetic, chronic, and progressive muscle disease caused by the deficiency of a protein called dystrophin. This protein keeps the muscles healthy.
• The disease primarily affects boys, but in rare cases, it can affect girls.
• The enlarged calf muscles, known as pseudohypertrophy, means the muscle tissue is abnormal.
• The weakening muscles cause children with DMD to fall frequently, toe walk, have trouble climbing stairs, getting up from the floor, or running. As illustrated below, the Gowers sign is when a child uses the arms to walk up the legs to get to the upright position.

• Duchenne muscular dystrophy is typically inherited through the mother as a manifesting carrier. In about 25% of cases, however, the disease occurs spontaneously in people who do not have a family history of DMD.
• Since DMD and Becker Muscular Dystrophy mimic one another in the early stages, children with the Becker form walk longer and live longer.
• DMD and Becker are incurable diseases.
• Without a cure, Hayes would have a short life.
• I needed to remain hopeful that our family would not be alone with the help and hope of the caring people associated with the work of the Muscular Dystrophy Association.

Resources

MDA is an excellent resource for all neuromuscular diseases, not just muscular dystrophy. The website lists the conditions, care and services MDA provides, science and research for cures, educational materials, how to connect with other families for support, and how to get involved. https://www.mda.org

What you don’t realize at first when your family’s future includes an incurable disease for your child is that everyone gets the disease.

It was the beginning of the grieving process, diagnostic process, endless medical specialist appointments, and an ongoing connection with the MDA, soon to be complicated by the public school journey.

Stay tuned for my Jail Bait Advocate story coming up down the road that I call Don’t You Think Your Child Would Be Better Off At A School That Specializes In Physical Disability?

Tough Cookie Tip: I found a beautiful poem, Author Unknown, that eloquently captures where I tried to keep my focus from this day forward. What would your promise be if this happened to your child?

Copyright © 2022-2025 Marilyn K Fuller. All Rights Reserved.

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