Cattelaya with her Early Intervention team

When Frances Bustillo received the diagnosis of Trisomy-18 for her baby, Cattelaya, she knew they were facing significant challenges in dealing with the terminal syndrome. She is grateful to have Northeast Arc helping them navigate those challenges.

Frances was referred to Northeast Arc’s Early Intervention program when Cattelaya was still in the neonatal intensive care unit at Boston Children’s Hospital and they started receiving services when Cattelaya turned 3 months old. More than a year later, it has turned out to be a wonderful partnership.

“I have had nothing but a good experience,” Frances says. “I like the team I have.”

That team is led by Julianne Davis, the service coordinator and occupational therapist who sees the family weekly, and physical therapist Meagan O’Neill, who comes twice a month. Social worker Jessica Bergeron also played an important role in getting Cattelaya to this point.

Trisomy-18 is a chromosomal condition that results in growth delays and abnormalities in multiple body parts. It affects 1 in 5,000 babies and studies show that only approximately 10 percent of babies born with the condition live beyond one year, though a woman in Oklahoma who was diagnosed at birth celebrated her 40th birthday in 2020.

Cattelaya had heart surgery at 2 months and is fed through a G-tube. Kidney problems are a distinct possibility and she has a very weak immune system. Nonetheless, she is a “happy baby,” her mom says, giving some of the credit to the Northeast Arc professionals who provide invaluable support.

“Julianne has gone above and beyond,” says Frances, a Revere resident who was not familiar with Northeast Arc prior to the referral.

“I knew they were going to be an extra set of support, but it has been a lot more than that,” Frances says. “We wouldn’t have been able to make it through the last year without them.”

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