Passing objects between his tiny hands. Sitting up on his own. Rolling on his belly. Greeting his parents with a smile.
These are the little miracles members of CHD’s Early Intervention team have helped bring to 17-month-old Dylan and his family over the past year of working with the child. And, after being diagnosed with a rare, chromosomal disorder, each passing year for Dylan will be a bigger miracle.
MECP2 duplication syndrome occurs almost exclusively in males and causes severe to moderate neurological and developmental delays. The disorder was only discovered in 2005 and occurs in only 1 in 10,000 babies, according to available statistics.
Dylan’s life has not been easy essentially from the moment he was born. He’s suffered from respiratory distress, frequent vomiting, significant developmental delays and other health problems from the start.
“He’s been in and out of hospitals almost his whole life,” said mom Christina Montes-Peralta, of Springfield.
She and wife Roselin Peralta trudged from one doctor’s appointment to the next in the first months of Dylan’s life, getting few answers.
“They kept saying ‘he’ll grow out of it,’ but we knew something was really wrong,” Peralta said.
The moms found a welcome advocate in Cindy Napoli, program supervisor for CHD’s Early Intervention team, which serves around 300 children from birth to 3 years old from Greater Springfield who have various developmental delays.
Like Dylan, many children under the team’s care receive a wide range of services including physical, occupational and speech therapy – plus supports for parents.
When Napoli met the Montes-Peralta family, she began attending Dylan’s doctor’s appointments with them and helped raise up their voices with physicians.
“I felt like we weren’t being heard or believed,” about the gravity of their concerns over their son’s health problems,” Peralta said.
Napoli pushed to get Dylan to the proper specialists and he finally received the MECP2 diagnosis, which — while grim – gave the family, Dylan’s clinicians and CHD therapists a better handle on how to manage his care and spur progress in his development. Under that broad umbrella of care, Dylan has flourished.
“Without Cindy we wouldn’t have known where to turn. Now, Dylan keeps surprising his doctors … Every milestone is a miracle. Each year will be a miracle,” Montes-Peralta said.
The moms, Dylan, and their older son, 11-year-old Noah, an honor student at Deberry Elementary School, said the winter season and holidays can become overwhelming since both were forced to stop working to manage Dylan’s essentially ‘round-the-clock care.
“Noah is always so sweet to his little brother. Sometimes I’m a little scared he’ll feel ignored. But, he never complains. We would love to give him a special Christmas,” Montes-Peralta said.
CHD’s Early Intervention team also facilitates weekly playgroups for parents and toddlers against a colorful backdrop at its kids’ gym and playroom on Birnie Avenue in Springfield. Nikita Dancik, a mother of two sons, 6 and 2, said she sought out CHD’s Early Intervention service for her younger son on the advice of her pediatrician.
As a first-time mom to her older son, Remi, Dancik said she often felt isolated and didn’t realize the significance of Remi’s developmental delays until he was school-aged and began having problems in first grade.
“I just didn’t know any better. I often felt a little isolated because I didn’t know a lot of other moms with kids his age. He didn’t speak until he was 3, he was having behavioral problems. He got kicked out of three schools in first grade,” Rancik said.
After having her second child, she recognized similar delays in his development and immersed Noah in CHD’s Early Intervention program.
“I was really concerned we were going down the same road. But it’s been night and day. I feel really supported here and they’ve been supporting us as a whole family,” Rancik said.
Noah’s vocabulary is up to 100 words, and going to playgroup is among the highlights of their week, she added.