So, when he was diagnosed with arthrogryposis multiplex congenita (AMC) as an infant, a condition where multiple joints of the body are contracted or stiff, she knew they were in for, what she calls, "an adventure."
“Nothing was ever how it was supposed to be,” she said. “Everything seemed to not be the norm.”
There is no single cause linked to AMC. However, it is usually caused by decreased movement while a baby is still in utero, or a congenital defect from the parent. Heather said that neither was the case for Zachary, and that she remembers how much he moved when she was pregnant.
Every AMC patient shows different symptoms, which can require a specialized treatment plan for each person. Some of Zachary’s symptoms included severe clubbed foot and hands, and stiff shoulders. While an infant, doctors began performing multiple cosmetic surgeries that initially straightened Zachary’s feet and hands. Heather still vividly remembers a surgery where his doctor removed a piece of bone from the top of his wrist, which allowed his right hand to straighten.
It seemed like a whirlwind when it was all happening, but the staff quickly became our family.
Heather said that there were so many procedures and surgeries done that she can’t remember them all. She also noted that there were many times when Zachary’s muscles and joints would tighten back up due to growth spurts throughout his childhood. However, she said that she will never forget the care and compassion that she and Zachary received from the Shriners Children’s Houston (now Shriners Children's Texas) staff.
“It seemed like a whirlwind when it was all happening, but the staff quickly became our family,” she said.
Zachary quickly became a popular face at the hospital because of his lively and energetic personality. Even as a young child, he quickly made friends with other patients and staff, eventually becoming a Patient Ambassador. While he may not remember most of the treatment from his early life, he does remember some of the fun activities that he was able to participate in.
Some of them included attending Houston Astros games and meeting the players, and serving as a standard-bearer at the Shriners Children’s Open in Las Vegas, Nevada.
Throughout Zachary’s childhood, he and his mother both agreed that they wanted to help others who have AMC in any way they could. They allowed his doctors at Shriners Children’s to document his treatment plan, including his progress and failures, in hopes that it would make things easier for future patients.
“There are things that they are doing for patients now because it worked for me,” Zachary said.
“If it will help with someone else’s treatment, I said 'absolutely,'” Heather added. “I was blind sided by the diagnosis, so I knew we could help someone else.”
Today, Zachary is a busy college student with hopes of making a career in coaching and becoming a teaching assistant for disabled students. When not in the college classroom, you can find him checking various sports scores, assisting the local high school baseball team, and exploring his love for history and politics. He credits the care he received from Shriners Children’s as being a big part of the reason that all of this is possible.
