Stories about: Down syndrome

Two moms, two daughters and a bond over a shared diagnosis

Julia Grace and Lily Alice, who both have Down syndrome pose in a field of tulips
Julia Grace, left, and Lily Alice [PHOTO: HARVEST HILL PHOTOGRAPHY]

When Kristen and Ella met on an online support group for moms of babies born with Down syndrome, they made an instant connection. The two have been friends ever since. “The first time I met Ella, it felt like I knew her my whole life,” says Kristen, mom to 2-year-old Lily Alice. “It was a bond that felt like family.”

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A diagnosis of Down syndrome motivates a family to go the extra mile

Mae, who has Down syndrome, sits on the bottom of a slide. As she leaves nursery school at the end of each day, Mae Tapley blows kisses to every person she passes on her way to the door. For her mother, Susie, watching teachers and staff step out into the hall to wave to her daughter is a welcome change. Three years ago, when Mae was born with Down syndrome, it seemed like no one knew what to say to her.

“When you have a typical child, people tell you how beautiful they are,” says Susie. “With Mae, no one told us she was beautiful or that she would have a full life until we came to Boston Children’s Hospital. They believed in her from the first day.”

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Down syndrome: Reimagining what’s possible

Ella kisses baby Juila on the cheek.
Photo credit: Nicole Starr

I first met Ella Gray Cullen in the Advanced Fetal Care Center (AFCC) of Boston Children’s Hospital, shortly after she had received a prenatal diagnosis of Down syndrome. Like many parents expecting babies with conditions that can be diagnosed prenatally, she wanted to know more.

We talked about the additional medical screenings that would be recommended for her daughter to evaluate for cardiac defects and other conditions that are more common in children with Down syndrome. We discussed the developmental supports through Early Intervention and school that would be available to help her daughter learn and develop to her best ability. And, we talked about breastfeeding.

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“I get them distracted.”

20151015_CareTeamKevin-3

(Katherine C. Cohen/Boston Children’s Hospital)

Nate Simons

Patient Liaison

open-quoteI’m a patient liaison. That’s my official title, but I prefer greeter. I greet the families that come in and walk them to their appointment rooms. I play with the kids. The kids are so adorable. They’re so cute.

Sometimes if they’re cranky, I play “Wheels on the Bus” on Youtube on my phone. I get them distracted with “Wheels on the Bus.”

That’s my favorite song ever. I used to listen to it myself when I was a kid.

I love my job. I have a great boss, and I love the pay. I work here part-time. I want to keep my job until whenever they tell me to leave, until they don’t need me anymore, until I retire. I’m hoping I can keep this job for a long time.close-quote

 

care-team-logoCaring for patients is a true team effort. Care Team highlights the dedication of the people throughout Boston Children’s who do their part to comfort and support patient families each and every day.

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