Stories about: Down syndrome

Children's blog makes headlines

Brian Skotko and his sister, Kristin

Children’s Hospital Boston geneticist Brian Skotko, MD, MPP wrote a Thriving blog in response to a hurtful article that circulated throughout the Internet, in which a writer at GQ likened poor fashion sense to “Style Down Syndrome.”

As a member of Children’s Down Syndrome Program, and brother to a person with Down syndrome, Skotko was outraged at the insensitivity of the original article and vowed to do all he could to raise awareness around the negative impacts these types of slurs have.

Good news. He was successful.

Read Full Story

Mock my pants, not my sister

The following was written by Brian Skotko , MD, MPP, a Physician at Children’s Hospital Boston’s Down Syndrome Program. It’s in response to a feature in GQ magazine that used insensitive language.

Brian Skotko and his sister, Kristin

On July 15, John B. Thompson of GQ magazine slammed Bostonians as the worst dressed in the nation.  Evidently, our beloved Beantown is actually a “bad-taste storm sewer” where all the worst fashion ideas come to “stagnate and putrefy.”  He further decries, “Boston suffers from a kind of Style Down Syndrome , where a little extra ends up ruining everything.”

Go ahead, GQ, and mock my blue whale-emblemed Nantucket-red pants. Laugh if you want at the loud argyles that I prefer to wear with my black suit. I don’t even care if you dismiss the sexy pink polka-dotted tie that I like to wear with my blue-checkered shirt in clinic. But, whatever you do, do not mess with my sister.

My sister, Kristin, has Down syndrome, and let me explain what “Style Down Syndrome” really is.  “Style Down Syndrome” is smiling when everyone else prefers to frown. It’s spending three summers, in sheer determination, learning to ride a bike because you want the freedom to be like everyone else. It’s singing tunes from Grease at the top of your lungs with your friends. It’s celebrating a third-place victory at a swim meet with as much gusto as the gold medalist.

Read Full Story

Team player

Have you seen this great New England Cable News story about Ben Majewski, a 22 year-old student who works at Children’s Hospital Boston’s Down Syndrome Program?

Needless to say, we’re big fans of Ben’s work. To help spread the news of his many accomplishments, we’re sharing a Dream story written about him last year, right around the time when he first came on board as a Children’s employee.

The young couple in the waiting room of Children’s Hospital Boston’s Down Syndrome Program looks nervous. It’s the first time they’ve brought their 8-month-old son, Sam, to the clinic, and they’re uncertain just what to expect. But when Clinic Coordinator, Angela Lombardo, introduces them to Ben Majewski, the clinic’s new resource specialist, they relax almost immediately.

Read Full Story

Against my better judgement: a week in review

I don’t usually like to do Thrive posts that wrap up a previous week’s events, but last week was an interesting and exciting week on Thrive and at Children’s Hospital Boston, so I thought I’d break my own rule just this once (and I reserve the right to break it again!)

The post by Dr. Brian Skotko (shown here with his sisters Kristin and Allison) generated a lot of conversation—and controversy.

The most widely read, shared and commented on post—by far—was Dr. Brian Skotko’s thought-provoking article, “Will babies with Down syndrome slowly disappear?” Dr. Skotko, a clinical genetics fellow in Children’s Down Syndrome Program and the brother of a young woman with Down syndrome, talked about a new study that says mothers-to-be will soon be able to get a simple blood test during the first trimester of pregnancy that will let them know if their baby will have Down syndrome. This caused Dr. Skotko to ask:

Read Full Story