When you join Walk With Me, you’re helping children like Ezra
Southwest Human Development will host the ninth annual Walk With Me family fun walk and carnival on Saturday, Feb. 25, to benefit the nonprofit’s Easterseals services for young children with disabilities. The annual event will be held at Scottsdale Civic Center Park from 7 a.m. to 10:30 a.m.
Festivities will feature a 1-mile family fun walk, entertainment, food, inflatables, carnival-themed games for the whole family and more. Walk With Me is family-friendly and builds a community atmosphere that raises awareness to support children with disabilities.
When Ezra was born, Lissette and Pedro welcomed their baby boy into the world with loving arms and hearts full of joy.
After observing some concerning characteristics, doctors ran genetic tests and diagnosed Ezra with Prader-Willi syndrome, a rare disorder present at birth that results in physical, mental and behavioral challenges, including a constant sensation of hunger, known as hyperphagia, which typically begins around age 2.
When Ezra was in the NICU, a team of specialists from Southwest Human Development met with Lissette and Pedro to talk with them about the importance of early intervention and how it could help Ezra.
“I’m the first member of my family to have a child with disabilities,” said Lissette. “It can get confusing, especially when it’s your first child.”
Though Prader-Willi syndrome is a complicated diagnosis, Lisette and Pedro never gave up hope of a bright future for their son.
Through the Children’s Developmental Center at Southwest Human Development, Lissette and Pedro were able to access the programs and services Ezra needed. While many parents find themselves going from doctor to doctor in search of answers, the Children’s Developmental Center provides comprehensive and integrated evaluation, diagnosis and treatment of developmental delays and disabilities, which eases the strain on families.
While working in partnership with Ezra’s family, the early childhood specialists at the Children’s Developmental Center recommended that Ezra also visit Southwest Human Development’s ADAPT Shop, a unique place where young children with disabilities can get the physical supports that they need to become independent and active participants in their home, school and community.
The results of the ADAPT Shop evaluation provided a life-changing step in Ezra’s life. The first time Ezra tried out his “happy chair,” a custom seating device that helps support children as they develop, he was able to lift his head up and look around for the first time on his own.
“I was just overcome with joy like a little kid at Christmas jumping up and down,” Lissette said. “I wanted to record everything. It was overwhelming to the point where I had tears in my eyes.”
Ezra’s first moments of being able to lift his own head were just the beginning. Lissette and Pedro continued working with the ADAPT Shop to ensure that Ezra would continue his development so he could have the best possible quality of life.
“What really impressed me is that the ADAPT Shop therapists actually caught onto Ezra’s scoliosis before the doctor did,” Lissette said. “They’re really aware of Ezra’s body, movement and contouring.”
As Ezra grew, the ADAPT Shop professionals were able to make on-going adjustments to his “happy chair” so the equipment continued to meet his needs.
Families like Ezra’s face similar challenges, often not knowing where to turn for help. Southwest Human Development provides over 40 programs like the Children’s Developmental Center and ADAPT Shop to assist families in providing the best possible future for their children.
Join Ezra’s family in supporting children with disabilities by registering for Walk With Me at swhd.org/walk!