The name “Desiree” means “the desired one.” For (almost) ten-year-old Desi, this name is incredibly fitting.
From Desi’s first anatomy scan during her mom Alisha’s pregnancy, the doctors expressed serious concerns about her health and well-being. But Alisha remained determined to bring Desi into the world. When Desi was born, she had multiple complications, including a blocked airway. However, at first, doctors couldn’t provide a specific diagnosis or prognosis.
For a year and a half, Desi’s family sought multiple medical opinions both in and outside of the Richmond area – including geneticists and specialists. However, it was the geneticist at VCU who finally diagnosed her with a rare genetic syndrome called Cornelia de Lange syndrome (CdLS).
This syndrome typically impacts growth, cognitive and behavioral development, as well as multiple internal organs including the gastrointestinal, cardiac, and neurologic systems.
“Now we had a label and a name,” shares Alisha. “While we had always been treating Desi’s symptoms, the diagnosis helped us focus on getting the specific support and services she needed.”
Today, Desi is a happy elementary school student. “She loves everything about school,” Alisha says. “She’s very social and very popular.” Alisha added that Desi was voted a ‘fashionista’ in school because of her flair for fashion and design.
Alisha and her family first became involve with Better2gether because they wanted to experience outings with other families, as well as gain support from other parents who share similar journeys. One of their highlights was attending a Better2gether Summer Bash program. “Desi enjoyed watching the kids,” Alisha shares. “And we appreciated having the space and accessibility that allowed the children to make crafts and participate in activities.”
Better2gether’s commitment to creating a supportive network for parents is especially meaningful to Alisha. “I think it’s harder on the parent than it is on the child,” she shares. “Children only understand and feel love and support. But parents can get so busy providing that love and support, they may not always pay attention to their own needs.”
“Give yourself grace and practice self-care so you can properly and better care for your child,” Alisha recommends. “I would tell any parent: you’re caring for your child, take care of yourself, as well.”
Alisha and her family are grateful for Better2gether’s programs and services that are designed to support the needs of children as well as their caregivers.