Stories about: Down syndrome

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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Why Yoga is like food

Yoga1As far as Emily Davidson, MD, MPH, RYT, is concerned, claiming to not like yoga is like saying you don’t like food. “There’s a really big range of what kinds of yoga practices you can do,” she explains.

Davidson, who is the director of Boston Children’s Down syndrome Program, speaks from personal experience. She started practicing yoga in 1998 after she was diagnosed with coronary artery disease and discovered that, along with improving her flexibility and strength, yoga helped manage the stress of her diagnosis and treatment.

In fact, she liked it so much that she went on to complete a 200-hour yoga teaching program and set out to offer her patients with Down syndrome the same benefits she got from practicing it by launching a yoga class at Boston Children’s Primary Care at Martha Eliot.

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Special Olympics: How I become a ‘believer’ over this very special summer

By Marc Bernard Ackerman, DMD, MBA, FADPD, FACD, Director of Orthodontics, Boston Children’s Hospital

Marc Ackerman

Every September, I’m taken back to the fourth grade when Mrs. Henderson passed out black and white marble-colored journals to our class. She explained that over the course of the year we were going to keep a record of all our important fourth grade memories. Our first assignment was to answer the question: what was the most meaningful thing you did this summer?

All these years later, I can’t remember what I wrote, but I do remember Mrs. Henderson being underwhelmed by the responses she saw. One kid wrote about visiting a relative on a farm and riding a tractor. Another bragged about attending NASA space camp. Fun times for a child, but what I think Mrs. Henderson was hoping for was a recount by a student who had spent his time helping someone else. In keeping with that theme, Mrs. Henderson spent the year exposing us to can drives for the hungry, blanket drives for the homeless, spring clean-up at the school park and many other volunteer activities.

It was a concept that resonated with me, but throughout my professional education and career thus far, finding time to devote to altruistic activities has been hard. Any excess of time has been taken for professional development, and more recently, to starting a family of my own.

However, my outlook on how to allocate “free” time and how it related to helping others was forever changed this past summer when my good friend and colleague, Steve Perlman, DDS, invited me to participate in a train-the-trainer session for Healthy Athletes/Special Smiles held at the Special Olympics Southern California.

At first, I was slightly hesitant to accept the offer to become the Healthy Athletes/Special Smiles Clinical Director, because I doubted I’d ever have the time to devote so much it to that movement. Fortunately for me, Steve’s not the kind of guy who takes “no” for an answer.

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