WellesleyWeston Magazine

SUMMER 2018

Launched in 2005, WellesleyWeston Magazine is a quarterly publication tailored to Wellesley and Weston residents and edited to enrich the experience of living in two of Massachusetts' most desirable communities.

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Ben's tracheostomy suction catheters, was lost. Fortunately it arrived on the next plane, and the Elwys managed to carry out their family vaca- tion. But on the return flight, TSA agents made Rani remove Ben's hip- to-ankle leg braces before walking with him through the metal detectors, all while 20-month-old Charlotte screamed to be held and hundreds of travelers waiting in line watched the mayhem. "I thought to myself, 'I am never, ever doing this again,'" states Rani. For four years, the Elwys didn't step foot on another plane. Instead, they purchased a wheelchair-accessible van in early 2009 and traveled Europe — the last three with their baby, Lucy, whom they took to India and Egypt. "We didn't expect our lifestyle to change with our second baby," explains Rani. "But when Ben started exhibiting signs of what would eventually be diagnosed as Schwartz-Jampel Syndrome, our journeys took us to top hospitals in Ann Arbor, Baltimore, and Boston to consult with specialists. We managed a few fun trips in between, carting respiratory and walking equipment and ordering oxygen for long plane rides. This included a trip back to London in 2004 to visit friends." However, a 2007 trip to San Francisco almost thwarted the Elwys' travels forever. First, their bag with critical medical supplies, including The Elwys: (l to r): Charlotte, Sherin, Rani, Ben, and Lucy C O U R T E S Y O F B R I A N M A S S E R M A N P H O T O G R A P H Y Where Gratitude and Optimism Prevail W e l l e s l e y W e s t o n M a g a z i n e | s u m m e r 2 0 1 8 92

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