Angela Ames

Our son Henry was born premature and spent several weeks in the NICU. He was born with fluid in his lungs as well as being underdeveloped. Henry contracted RSV before the age of one. A year later we welcomed Maxton, also premature. That same year our good friends would welcome their twin boys, also premature. In the years following we would see each other at various March of Dime events. It was a bizarre "club" to find ourselves a part of. At the same time, a comfort in having a "family" connection in a very overwhelming stage of parenting. For us, March of Dimes slid in without us even having the understanding that we needed them as much as we did. Almost every neurologist, milestone marker, geneticist, physical therapist, or outside research organization such as the team provided to us through ISU (Iowa State University), had come as a suggestion from our March of Dime advocate/s. I know I have told this story several times, but it is why I feel so passionately about mother and baby care. Maxton was just a few months shy of his first birthday when our pediatrician told us that he believed Maxton was born with a rare muscle disorder. He didn't think Maxton would ever be able to walk. Before we left the doctor's office he had already booked us an appointment for the end of that week at the University of Iowa Children's Hospital. We were to meet with a pediatric neurologist to rule out another fear our pediatrician had and one who specializes in this particular kind of disorder. As I waited in the pediatrician's office, Maxton in my mother's arms, and Henry in my father's, my husband called. I shared what Dr. Jon had explained to me. As the words spilled from my mouth I saw a pacifier tumble to the floor. I turned to my father and saw that Henry was completely blue and stiff. His eyes had rolled and he wasn't moving at all. I called out for help. My dad sat frozen. A nurse ran out to my father and told him to rush Henry down to emergency and she would call 911. I stayed with Henry for almost a week at Blank Children's Hospital while Adam and his grandparents went with Maxton two hours away to Iowa City. We were numb to what was really happening in our lives. Henry just a little over two years of age layed helpless in a tiny hospital crib with wires connected to his little head. Maxton, a little over one was with Adam, my husband and his great-grandparents being told the same thing Dr. Jon feared. March of Dimes made sure we had everything we needed. If there was a new trial out there they felt the boys would benefit from, March of Dimes contacted us about it. They advocated in ways I as a new mother didn't have the strength to do. It did seem as if we had hit a wall in trying to find what exactly was "wrong" with Maxton. He did eventually learn to walk after two years of nonstop physical therapy. However, he would walk only on his tip toes and had a bowe to his legs. Dr. Jon and March of Dimes worked to put us in contact with a pediatric specialist in the Bay Area once it was confirmed we were moving to CA. We had only lived here a few months when we finally received a diagnosis. However, when the specialist looked at Maxton and said "I am sorry Bud, you are just not going to be able to play any sports, " Maxton, age seven said, "Watch me." I didn't have the heart to tell him the doctor was probably right. I just smiled and gave an uncomfortable laugh. As most of you know Maxton plays basketball, football, and when he attended Middletown Schools he did very well on their wrestling team. Maxton no longer walks on his tip toes and the bowe in his legs is gone. He was completely released in 2020 from the care of all of his specialists. We as a family no longer need our March of Dimes advocates. However, premature babies will continue to be born. I am an active member of the Calistoga Rotary Club. Rotary Club and the March of Dimes have a long history together. March of Dimes was originally, National Foundation for Infantile Paralysis. Founded in 1938 by President Franklin D. Roosevelt. The foundation originated from Roosevelt’s personal experience with polio, which left him paralyzed from the waist down. March of Dimes continues to support mothers and babies and we are here to support March of Dimes.