Two-year-old Giulia DiGiacomo loves being around her two big sisters and playing in the front yard, but right now, she’s all about “Baby,” her aptly named baby doll.
Intrigued by a nearby high chair, Giulia loosens her grip, helps settle Baby in, and sets out a multicolored buffet of rubber balls. Moments later, the toddler is off.
“She is constantly on the move in her chair,” says Dominic DiGiacomo, Giulia’s father.
Giulia – or “Giules” to her family – was born with Wieacker-Wolff syndrome, an extremely rare genetic disorder that carries a range of potential challenges: delayed motor development, skeletal abnormalities, including hip dislocation, and delayed speech.
“She is one of only 56 diagnosed cases in the entire world,” DiGiacomo says.
He and his wife, Dr. Megan Belfiore, learned something was amiss 18 weeks into the pregnancy.
“When she was in my belly, she didn’t move well. She had a lot of fixed, contracted joints,” Belfiore says.
Upon birth, Giulia spent a month in neonatal intensive care and later had a feeding tube inserted. Medical complexity was her family’s new reality, but support was waiting. Through Elkhorn Public Schools’ Early Intervention Program, DiGiacomo and Belfiore learned about CRCC, formerly Children’s Respite Care Center.
“We went back-and-forth with having someone in the home, but I liked the checks and balances of a bigger place,” Belfiore says. “It was good knowing they had nursing care – that was a huge drive.”
Celebrating 30 years of impact in 2020, CRCC provides skilled care; physical, occupational, speech, feeding and behavioral therapies; weekend family respite; a rich educational environment for children ages preschool to 21; and an array of resources for families of children with special needs.
Most recently, CRCC opened an innovative, integrative peer preschool program, “so that children with special needs and typically developing children have the opportunity to influence one another and learn together,” says Sarah Tselentis, CRCC’s director of development.
Supported, in part, by grant funding from Blue Cross and Blue Shield of Nebraska, CRCC currently serves some 400 children and young adults at its northwest and southwest centers.
“From the second Giules comes in, the staff is always so kind and excited to see her – and they’re like that with all of the children,” DiGiacomo says.
Giulia does physical therapy at the southwest center on Tuesdays and Thursdays and then spends the rest of the day there. That has allowed Belfiore, a veterinarian, to reap the mental and financial benefits of going back to work part time. The family also takes advantage of CRCC respite care on occasion.
“The respite care is a huge thing,” Belfiore says. “With October coming up – and some Fridays when the kids don’t have school – we can drop off Giulia at CRCC and spend the day with the ‘big kids’ at Vala’s Pumpkin Patch.”
With Giulia turning 3 in December, her family celebrates every bit of progress. She no longer needs the feeding tube, and she’s making strides using her arms and legs.
“When she started rolling independently, it was like Christmas for us,” Belfiore says.
As Giulia returns to focus on Baby, Mom and Dad set their sights on the future. Their hopes for their youngest mirror their hopes for her sisters: “That she is happy, as independent as possible and feels like she’s a valued part of society.”