Stories about: Down syndrome

Why Yoga is like food

20142027_MEHCyoga-11PreviewlargeAs 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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Self-advocate helps all

By Olivia Lepore

Nate at work

Learning that your child has been diagnosed with Down syndrome can be a challenging experience for many parents. At Boston Children’s Hospital, the Down Syndrome Program has found a way to give hope to both parents and children who come to the clinic—his name is Nate Simons. Simons is a valued 24-year-old member of the program’s staff, and like the children he interacts with at the clinic, he has Down syndrome.

Simons—who joined the team last fall—is the program’s second self-advocate, a two-year position funded by a generous gift to the hospital from a patient family. He was offered the role after successfully completing the same application process (cover letter, resume, and interview) as any other Boston Children’s employee.

Angela Lombardo, clinic coordinator, always felt there was something lacking from her team, like a puzzle with a missing piece, but when Nate joined the staff, she knew the puzzle was complete. “We are very grateful for the addition of the self-advocate position,” says Lombardo. “Nate—and his predecessor, Ben Majewski—have been remarkably successful matches.”

Simons works in the clinic two mornings each week, where he welcomes families upon their arrival to the clinic, administers paperwork to families, guides each family to their appropriate appointment room and performs various other tasks wherever the team needs him.

“I do what I can,” says Simons, who says his favorite part of the job is bringing toys to patients and watching the smiles light up their faces.

“He really helps patients and their parents,” says Lombardo. “The families who meet Nate are always so happy and relieved to see him when they return.”

Simons walks the 10 minutes to the hospital from his home in Brookline, where he lives independently in an apartment with his roommate and best friend. The two met while attending the Riverview School for students with learning disabilities in East Sandwich, Mass. Before that, Simons graduated from North Reading High School.

Simons is currently participating in an internship through the Jewish Vocational Services (JVS) “Transitions to Work” program, which teaches job skills to people with documented disabilities. His attendance will soon lead to a second job at CVS in the Boston area. When he’s not working, Simons enjoys playing basketball; he won first place in last year’s Special Olympics basketball event. He also runs track every Sunday through the Brookline Recreation Department.

All of Simons’ colleagues at Boston Children’s agree that his role as self-advocate is essential to the Down Syndrome Program, and Lombardo hopes it’s a position that the program can make permanent in the future. “We are really excited because there are a lot of programs that could follow this example and have self-advocates to represent their patient population,” says Lombardo. “It’s a win-win for everyone.”

 

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Early prenatal test continues to raise ethical questions and draw media attention

Grace

CBS This Morning recently took a look at a new test that will detect birth abnormalities at an earlier stage in a woman’s pregnancy. The new test, called the MaterniT21, can be administered at just 10 weeks and is safer and more accurate than current tests of a similar nature.

Detecting birth abnormalities helps families and health care workers prepare for the child and figure out the best ways to treat and support him once born, but there are also concerns about how such testing could affect birth rates of children with identifiable medical conditions.

Brian Skotko, MD, MPP, a clinical fellow in genetics at Children’s Hospital Boston’s Down Syndrome Program, was interviewed in the CBS piece and has been following the MaterniT21 story since it first surfaced. Also featured in the story is an adorable young patient of Skotko’s named Grace McLaughlin, as well as her mother Melanie, who discusses how having Grace has changed her life.

Both Skotko and the McLaughlins were also featured in a recent article on prenatal testing in TIME magazine, which explores what these types of tests could mean for future generations.

Click here for the option to read the full article.

To read more on Skotko’s take on MaterniT21 visit Thriving’s first blog on the subject from January 2011.

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Are medical communities the new marketing demographic?

Have you heard about the bald Barbie movement? It’s a grassroots, digital campaign asking Mattel to make a version of the doll without her trademark golden locks to benefit children with illness. According to the group’s Facebook page, which has gained more than 130,000 fans in less than a month, bald Barbie would let “children suffering cancer, alopecia and any other illness that causes them to lose their hair, feel just as beautiful as the dolls they play with.”

Regardless of how people feel about the plastic fashion icon—she’s been around for more than half a century but still seems to be a very polarizing figure; often because of her figure—the online support for bald Barbie is undeniable. Many people seem ready to overlook any issues they may have had with Barbie’s build and stereotyped past in order to focus on her potential as a cancer survival spokes doll. Here’s just a slight sample of the thousands of messages her online fans are sharing with each other:

I will keep posting all the great things about this Bald Barbie God Bless the work you are doing

I’ve forwarded it and wish I could do more. How can I help from Brazil?

Amazing idea! I re-posted a messages about a week ago that said…why don’t they make a hairless Barbie named hope dressed in pink with all proceeds going to help to cure cancer. I had no idea it was actually a work in progress! I 100% support this. I think it would make children fighting this feel good. Anything to help. And why not make dolls with other problems?! Spreading information and helping the cause or even a cure for the cause…what a Wonderful idea!

And it’s not just parents online that like the idea. Cori Liptak, PhD, a psychologist in the Pediatric Psychosocial Oncology Program at Dana-Farber/Children’s Hospital Cancer Center was recently interviewed about her support for the doll.

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