Category: Schwartz-Jampel syndrome

An extremely rare genetic neuromuscular disorder, with the hallmarks of myotonia, respiratory problems, skeletal dysplasia, and dislocated lenses.

Wheely dogs and international friends

Sunday evening I was driving down a residential road with Charlotte and Ben, and slowed down when I saw a couple walking their dog. It was dark, but I caught a glimpse of the dog and saw that the dog had hind wheels instead of hind legs. I told C&B this and they both immediately […]

Summer Computing Fun!

Finally, by the middle-to-end of July, I feel like we’ve got the summer rhythm going. Boy, it took a while! For me, summer is one of those things that I know will hit, but like the first snowstorm, I am always surprised when it does. I wish Sherin and I had the time to take […]

Always Ask!

Charlotte’s first foray into the land of Wellesley Little League has recently ended, and I think Ben is glad. We went to a lot of Sunday afternoon t-ball games this Spring, and we experienced excitement like a wasp’s nest in a tree above our head that made us run for our lives. Ben put the […]

Flying High!

When Ben was 5, his greatest wish was to fly. He didn’t care how–either planes or rockets would do. He was granted a room in which he could dream of flying, from the incredibly generous Room to Dream Foundation, who selected Ben as the third child (at that time) to benefit from a newly created […]

Are You Attached?

When my oldest daughter Lucy was born in 1998, it took me one week to realize that this young lass was never going to sleep according to my schedule. Daytime–always asleep. Nightime–always awake. Unless I planned on becoming nocturnal, I was just going to have to figure out a way to cope. Enter the family […]

Ch-Ch-Ch-Changes

Are any of you old enough to remember David Bowie’s song Changes? It was the theme of one high school homecoming dance…I won’t say which year! There are lots of changes going on. It’s getting towards the end of the school year, but it’s not just the end of any school year. Ben is graduating […]

Eighteen Years…and Counting

On August 16, 1991, I returned to London after a two-week trip to visit my dad and my grandparents in Kolkata, India. My grandfather had recently had a stroke, and I needed to get to Kolkata fast. The cheapest way? Fly Aeroflot–via Moscow, Sharjah and New Delhi, eventually landing in Kolkata. I’ll never do it […]

Ben Elwy, Medical Educator

The afternoon began with a plank-holding contest, followed by a heated game of chess. Then there was a bit of Minnesota trivia, a demonstration of Sprague band’s latest repertoire involving the snare drum and bells, and finally, Ben performed (death-defying, in his mother’s opinion) spins in his walker, using only his arms for support, in […]

Passion, for Ben

Lucy had a far-off soccer game, and Charlotte has a hacking cough, so it was just Ben and me this morning at St. John’s, to celebrate Palm Sunday and re-live the Passion. Ben didn’t complain that his sisters weren’t going with us. Ben’s only complaint–ever–is about practicing piano. Being at church with Ben is such […]

Unaffordable Health Care

Here is a little quiz: How much money did the Elwy family pay in out-of-pocket health care costs in 2011? a) $5,000; b) $21,000 or c) nothing. I’m not telling….yet! The media is viral with coverage of the many case filings at the Supreme Court of the United States regarding the Affordable Care Act (ACA). […]