Marina Leyba is crazy in love with precious Bella, her sweet, joyful 10-year-old daughter who, like most girls her age, loves watching movies and finds her little brothers a bit rambunctious.
Bella Lopez, who radiates happiness, has Angelman syndrome, a rare neurogenetic disorder that results in significant development and gross motor skill delays. Some with the syndrome never walk or talk.
Bella’s family is in her corner, cheering her on as she grows and achieves milestones. They find profound joy in this beautiful child.
“I love her just the way she is,” Leyba said. “She’s Bella.”
Leyba, who has spent the last decade advocating for her daughter, is serving as a co-coordinator of this year’s Angelman Syndrome Foundation (ASF) Walk in Tempe on May 20 at Kiwanis Park, 6111 S. All-American Way. The organization raises awareness about the disorder and funding for research. Also serving as co-coordinator is William Parra.
Leyba believes that fundraising by ASF and the Foundation for Angelman Syndrome Therapeutics will one day lead to treatment and a cure that will end seizures and improve motor and cognitive functions in “angels” with the syndrome. Leyba hopes researchers will develop medication to stimulate brain connections in people with the syndrome.
“We must never lose hope,” Leyba said. “The foundations are funding research that is groundbreaking. What a cure means for me is that my daughter will have an improved quality of life, that someday she will be able to speak and that we will be able to more accurately control her seizures.”
When Bella was a few months old, Leyba and her husband, Mike Lopez, noticed that this peaceful, lovely baby wasn’t developing as quickly as other infants. She didn’t babble and she was delayed in reaching milestones.
While her pediatrician didn’t seem concerned, Leyba took Bella to early intervention specialists, and just before her first birthday, Bella was diagnosed with Angelman syndrome.
The syndrome, which occurs in one in 15,000, was first identified in 1965 by English physician Dr. Harry Angelman. It may often be misdiagnosed as autism or cerebral palsy, according to ASF, and some pediatricians know little about it.
Bella has made steady progress over the past decade. She walks and climbs stairs. She’s working hard to use a fork and spook and while she is nonverbal, she communicates through signs and an iPad with specialized software. Bella has reached milestones through the dedication of family, a small army of physicians, specialists, therapists and teachers and her own vibrant spirit.
“Children with Angelman syndrome will progress — they just have to be afforded that opportunity,” Leyba said.
She wipes away tears as she recalls Bella taking her first steps, just before her fourth birthday.
“Some of our biggest challenges have become our biggest wins, like learning to walk,” Leyba recalled. The family worked with Bella on a therapy ball every day, strengthening her muscles and building her confidence.
“I remember finding her in her crib, pulling herself up. She was very determined. One day it all paid off and she just started walking. Here we were fighting as advocates as her parents to make sure she had the services she needed, but she was the true fighter,” said Leyba, who is a training manager at a biotech company in Tucson and a master sergeant in the Arizona Air National Guard, where she has served for 22 years.
Leyba is determined to provide Bella with what she needs to thrive. “We’ve done physical therapy, occupational therapy, speech therapy, feeding therapy, cranial sacral therapy and we investigated alternative treatments.” Bella’s little brothers, Miguel, 7, and Matthew, 6, cheer on their beaming big sister as she reaches new goals.
“At the heart of everything is love,” Leyba said.
She encourages families, caregivers and the general public to take part in the Angelman Syndrome Foundation Walk.
“We want people to know about Angelman syndrome,” Leyba said. “It’s important for our community that we find a cure and that we come together over this important issue.”
Bella’s family and friends will once again be walking as Team Bella. This big, supportive group has raised thousands of dollars for a cure in Bella’s name.
“I always tell Bella we are in this together,” Leyba said. “It’s hard but we are in this together.”
She extends that camaraderie to other families affected by Angelman syndrome.
“I want people to have hope and I want people to know they are not alone,” Leyba said. “If you need anything I am here to help. We, the families of angels, are a community and we are all here to help.”