Rebecca Evans is a busy mom to three boys: Christopher, five; Zach, three; and baby Preston, one year old. Zachary was born on March 27, 2001 in Eagle, Idaho. He came into the world with an assortment of anomalies including a heart defect, clubfeet, and hypertonia.
"The experts are fairly sure that Zach has Williams Syndrome," Rebecca explains. One of the features of this rare genetic syndrome is that those with it sometimes show unique musical talent.
"Zach loved music from day one, throughout his hospitalizations the nurses and me would sing to help him calm down. He dances and has better rhythm than anyone. We dance every night before bed; it's part of our routine. He's had his own band instruments since he was one as well," Rebecca says.
"Getting Zach's diagnosis has been a slow process," she goes on. "Although he didn't test positive for his FISH test, the genetic specialists believe that Williams Syndrome is his condition."
British cardiologist J.C.P. Williams first described it in 1961. Williams noted that people with the disorder have a characteristic narrowing of the aorta, the main artery leading from the heart. This can lead to high blood pressure. Kidney problems, elevated blood calcium and dental abnormalities may also be present.
Those with William Syndrome (WS) tend to be short and fine-boned, and they have narrow faces with broad foreheads, depressed nasal bridges, and sharp chins. Their eyes are widely spaced and often have a beautiful star-shaped pattern in the iris. WS was once also called "elfin face syndrome".
There are areas that people with WS excel in, such as music and social skills. They are usually delayed in others.
"When you read the characteristics for WS, along with the personality description, it's as though someone stepped into our home and described Zach."
Rebecca says that finding a diagnosis didn't make much of a difference for them. "My husband and I decided that we didn't need a label for Zach as long as his condition wasn't life-threatening," she explains. "It didn't really change our approach, as we had extensive early intervention, occupational, physical, speech, vision, and developmental therapies from the beginning with an amazing support team in our medical community."
Zach has had many surgeries including six eye procedures, hernia repair and appendectomy, ear tube placements, a pacemaker implant and others. For each and every procedure and surgery, Rebecca's husband, who she met when Zach was a year old, has been there to help. He adopted Zachary and has enormous belief in his abilities to overcome and accomplish things despite his disability.
"My husband was another angel sent to us," Rebecca says.
Rebecca has dealt with her share of negative people as well. "I've had many people warn me during my second pregnancy that I shouldn't have another child, and Zach's little brother is perfectly healthy. I've had others treat me as though I 'messed up' during my pregnancy, as though I did something wrong, or, as a single mom with Zach, should have given him up for adoption," she says.
"I knew no one would love my baby like I could. It's very painful to be harshly judged or to watch your child be judged by those who just don't understand. But, for every one person that had a negative view, I had a hundred more that lifted us up a bit higher."
Rebecca feels that Zach has been her teacher. "I feel my connection with God and my faith have been greatly impacted by Zach. He's my little miracle and he teaches me about embracing every moment, not casting judgment, and having faith every day. I have often said that I feel Zach saved me, in a spiritual way, because before him, I was a very self-centered person."
Along with all of his other therapies, Rebecca says that Zach got GT--God Therapy--through the prayers that have gone out for him and the angels who have entered their lives to help.
Rebecca shares what she has learned in raising Zach by becoming a Life Coach, and by helping families in her son's pre-school.
"I try to empower other parents through mentoring and workshops. I pray. I have an amazing support system in my community and with my husband. He is my pillar of strength."
Written by Carolyn Murray
