Nobody ever thinks this will happen to them. This survival tale is what I call The Day of Diagnosis and Death Certificate.
I guess every house has a history of smiles and tears. We had lived in our fixer-upper emerging home for four years, as I wrote about in Fixer Upper NDE and Fixer Upper Part Two.
The grand losses of Pete’s mother, my mom, and then Pete’s father all passing away before Hayes was two years old lingered on-some days in tearful doses and other days in silence.
Most of the large projects were completed, and Pete and I could finally relax and enjoy our little piece of the world. We both enjoyed being parents, and the time felt right to consider having a second child. Hayes was all for that; he loved babies and playing with his buds. He often asked, “Mama, could I get a little brother or sister?”
Our son brought out the best in us, and Hayes loved us mightily. It was exciting to think our tight threesome might become a foursome. I wondered if our second child would be Mary Kate.
Friday Stiff Neck
Hayes was enrolled in a Mother’s Day Out program at the Asbury United Methodist Church. As an only child, it was important to us that he knew how to get along with other kids and different personalities.
One Friday, when our son was four-and-a-half years old, he returned home from that program, and I noticed he had a stiff neck. I asked Hayes if he got hurt at school. He said he did not know. During the night, he awoke several times complaining that his neck hurt. So, the next morning, I called his pediatrician.
Saturday Pediatrician Appointment
His doctor examined him Saturday morning and asked Hayes how he hurt his neck. He answered, “A mean little girl, who looked like Miss Piggy, sat on him.” Always the jokester, my dear son laughed about the Miss Piggy wisecrack and blew his credibility. Because it was unclear whether Hayes had received any injury or if the pain was the result of a viral infection, his pediatrician recommended that X-rays of the neck be taken. Hayes and I went to the nearby hospital, and X-rays were taken that same day.
Monday Pediatrician Appointment
The X-ray results indicated a disc space calcification between the 5th and 6th vertebrae. Hayes’ doctor wanted a pediatric orthopedic specialist to review the X-rays. So off we went. I carried them to show the stranger we would meet later that day.
Monday Pediatric Orthopedic Specialist
During the appointment with the specialist, Hayes continuously ran back and forth in the undecorated examining room. I suspected he was trying to burn off waiting room anxiety. I saw my son’s nonstop demonstration as an opportunity to share my concerns about the persistent toe walking and large calf muscles.
Monday Blood Test
The specialist, who had been busy studying the X-rays, noted my concerns and asked that I take Hayes to a nearby lab to have his blood drawn for a series of tests. He specifically mentioned a CPK count, which stands for creatine phosphokinase. Off we went again for the third stressful appointment on the same day.
I was emotionally maxed out at this point in worry about my son. I could only imagine how hard that day was for Hayes. We both suffered from the Mr. Marilyn Feeling, which is my cranky side should I get too hungry or tired. So, we Miss Piggied Out at Pistol Pete’s Pizza (one of Hayes’ favorites) after our full day of medical events.
Pete was anxious to hear about the results when we got home.
Tuesday The Call
We returned home from a family outing at our neighborhood park. When Pete and I entered the bedroom, we noticed the red light blinking on our answering machine. My gut alarm went off, and I had a sinking feeling. Hayes played in the den while we checked the messages.
There was only one. “Hello. (I recognized the voice immediately. It was the orthopedic specialist). The results of the blood tests are back, and I would like to see you in my office as soon as possible tomorrow.”
I gave Pete “the look.” Ever the optimist, he encouraged me to think positively and said he would join me for the appointment with the specialist.
From that moment, in full-blown mother’s intuition, I started preparing myself for the unknown news of tomorrow. I did not sleep that night.
Wednesday Some Good News Some Bad News
This is the reality every parent is never prepared for.
We dropped Hayes off at the Mother’s Day Out program on our way to the appointment.
The pediatric orthopedic surgeon entered the examining room in his starched white coat and bowtie, where Pete and I numbly waited frozen in fear. I never forgot how he broke the news to us.
Diagnosis
“I have some good news and some bad news. The good news is that Hayes has a strained neck and calcification, which can be an old injury or congenital in families. The calcification is not a significant concern for your son. The bad news is that the combination of toe walking, calf hypertrophy, questionable Gower’s sign, and an elevated CPK level of 26,568 (measures proteins in a person’s cells and an important way that doctors evaluate muscle damage) indicates your son has muscular dystrophy, and I think it’s Duchenne.
When Hayes is about eight years old, we’ll cut his tendons, and he’ll either be able to walk in long leg braces with a walker as an aid or use a wheelchair to get around anywhere from 8 to 12 years old.”
Death Certificate
“He’ll be lucky to live past 20. But the immediate next step is to see a neurologist, and then I’ll schedule a calf muscle biopsy surgery for next week.”
Pete and I could not hold back the overwhelming sadness and shock following the surgeon’s matter-of-fact outline of his prediction of Hayes’ life. The tear streams were apparent on both our cheeks as we held hands to try and survive the most unexpected news we ever received. It was the fourth time I saw my husband cry.
We were shattered. I broke the silence on our behalf by choking out: “Muscular Dystrophy?” Then the surgeon said, “Yes. Do you know what muscular dystrophy is?” And I replied, “Yes. I have watched the Jerry Lewis/MDA Labor Day Television since I was a kid.”
I asked the surgeon, “Is there a cure for Duchenne Muscular Dystrophy?” He replied, “No.” Then I asked, “What is the purpose of the calf muscle biopsy?” The surgeon explained, “The results of the biopsy will distinguish between Duchenne and Becker muscular dystrophy. The early symptoms mimic one another, but the boys walk and live longer if they have the Becker form.”
The surgeon said he would give us some time and left the patient’s room. When he returned, I told him that Pete and I did not want to schedule the calf muscle biopsy until I could go to the Albuquerque Muscular Dystrophy office.
Resource Parent Project Muscular Dystrophy
I highly recommend this Four Star Charity if your family or someone you know might be in a similar circumstance. Founded in 1994, part of their mission statement is: Parent Project Muscular Dystrophy’s mission is to improve the treatment, quality of life, and long-term outlook for all individuals affected by Duchenne muscular dystrophy through research, advocacy, education, compassion, and creating a supportive community for people affected by Duchenne. https://parentprojectmd.org
Perpetually Breaking Hearts
Our reality, in 5 days or 120 hours, went from having a perfectly healthy child with a stiff neck to a child with a chronic life condition who would waste away a day at a time from an incurable disease known as muscular dystrophy.
There was no history of neuromuscular disease on either side of our family. Hayes was the rare 1 in approximately 3,500 births.
In the time it took the surgeon to blurt out his diagnosis and death certificate, our dreams and hopes for our son’s bright future vanished. Out of all the challenges I previously wrote about in my blog, receiving this news when our child was four-and-a-half years old was the greatest test of my faith and our marriage.
We had to accept this was not the life we wanted for Hayes and could not fix the fact that he would have to survive living with a progressive lifelong physical disability and incurable disease.
Pete and I wanted our son to have the most normal life possible, filled with love, fun, friends, and success. Time would reveal if we had what it took to make all those things happen.
What would daily life become for the Fun Fuller Family and our future on Medical Death Row?
Tough Cookie Tip:
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You did a great job with Hayes. That’s why he turned out to be such an exceptional son to you and Pete.
How blessed Hayes was to have you. I firmly believe we are placed exactly where we need to be. Hayes needed loving parents who would allow him to live his very best life without allowing his disability to hold him back. The countless parents of children with disabilities (myself included) that you have nurtured, as a result of having Hayes, needed (and continue to receive) your devotion, experience and message of hope as they faced despair. And, you needed all of that to make sense of your childhood. The empathy you developed growing up was a gift that you continue to share with others. The resilience in the face of tragedy you demononstrate serves as a beacon of hope for those only able to see the darkness of a particular moment in time. It renews their faith that light is right around the corner. Blessings are often disguised as one’s most difficult moments. It takes a Tough Cookie to recognize the opportunities that are born in them. You have earned your stripes my friend. Thank you for sharing.