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Dayanara’s story: A team-based approach leads to greater confidence for girl with Down syndrome

3 minute read

Dayanara and her mother hug.At 12 years old, Dayanara Benitez is a dynamic, cheerful girl with unmatched confidence and a love for dance. And according to her mother, Wendy, the Down Syndrome Program at Massachusetts General Hospital and Mass General Hospital for Children (MGfC) has made a major difference in Dayanara’s life. The program has helped foster confidence and taught both Dayanara and her family how to truly thrive.

Prenatal testing reveals Down syndrome diagnosis

Wendy had learned that Dayanara had Down syndrome through prenatal testing she underwent while pregnant. When Dayanara was five, Wendy and her husband, Bertilio, transferred her care to MGfC.

“As a young mom, I was scared and overwhelmed because I didn’t know much about Down syndrome at first, and I kept focusing on the negatives,” said Wendy. “But, [at MGfC,] everyone was so friendly and provided a lot of helpful information. They have so many resources and connections that have been helpful for Dayanara as she grows up.”

A holistic, family-centered approach to care

The Down Syndrome Program at MGfC takes a lifelong, family-centered approach to care, beginning with prenatal testing. Patients and their families work with a multidisciplinary team of experts and specialists, from physicians and nutritionists to speech and language pathologists, dentists, neuropsychologists, and more.

What makes the Down Syndrome Program unique is our providers. We are a one-stop shop. There are multiple phases of care, divided by age groups, where each visit is customized to the needs of the patient and their family.

Brian Skotko, M.D., MPP

Director of the Down Syndrome Program and the Emma Campbell Endowed Chair on Down Syndrome
Massachusetts General Hospital

Dr. Skotko explains that the program’s holistic approach also considers and supports a patient’s entire family. “Dayanara has a younger brother, and what a benefit it will be for him to grow up with her as his big sister from whom he can learn,” Dr. Skotko said. “As he gets older, we can help answer his questions about her and about Down syndrome.”

Ongoing medical and developmental support at home and school

Today, Dayanara’s care team is supporting her in myriad ways, including discussing both her life at home and at school. Together with her family, her team continues to offer guidance, making medical and developmental recommendations both in the office and in the classroom to help her flourish at each stage of life.

As they do, Dayanara continues to grow. Almost by the day, her family and care team can see her develop and thrive in so many aspects of her life.

“Dayanara is a beautiful, blossoming young girl who is coming into her own personality and taking a more active role in her care,” said Dr. Skotko. “She has rhythm. She has groove, and she brings such joy to her life, her family’s life, and to our lives.”