Extraordinary Lives: Susan Chapin Courage, Lemonade and Learning to Shine Again

When I launched the Extraordinary Lives blog, I wrote this: “It’s about seeing possibilities in adversity. It’s about caring for others. It’s about pushing yourself a little further than you thought was possible. It’s about not giving up on yourself.”


Susan Chapin, an IH Ambassador who has handled the worst life has to offer with incredible grace, is absolutely the embodiment of these qualities. Susan’s eldest daughter, Blair, was diagnosed with Sanfilippo Syndrome, a rare neurodegenerative disorder caused by an enzyme deficiency, at age six. This lack of enzyme prevents the natural recycling process of the body and the children experience loss of speech and cognitive skills, loss of mobility, and dementia.


No child survives Sanfilippo. Blair lost her battle in April of 2017, at age 15. In those nine years, Susan put Blair first, stepping away from work and volunteering. “Our goal was to make Blair smile. Every single day.”


Susan makes it sound easy. It was anything but. She admits, “There were dark days but the light was Blair. She was the courageous one and truly the light of our household.”


That courage inspired younger sister, Grey, to launch the first Purple Lemonade Stand for Courage in 2011. The community rallied around the cause for six years, with people dropping off muffins to sell along with the lemonade and one woman writing a $1,000 check with a note thanking Grey for making the world a better place.


“We didn’t have it last year. My daughter died,” Susan says quietly. She adds, “Grey wanted to bring it back this year.”


The 2018 stand will have a twist—an India Hicks Get Together Give Together alongside the Purple Lemonade Stand. Susan launched her India Hicks business as she re-entered her real estate business.


“I needed to find myself again. For the last four years, Blair needed full-time care, she needed help with bathing, dressing, brushing her teeth, all of her self-care. I dressed in clothes that looked fine for a trip to the grocery store and could get wet. My IH business has given me a reason to dress up, put on beautiful jewelry and reconnect with friends. It has been exactly what I have needed to not only survive these last months, but to actually begin to shine.”


When we founded India Hicks, the collection was the thing. That quickly changed as the Ambassadors became the thing. To know that someone like Susan is out there putting our business to work in the name of this cause is both exactly what I imagined and beyond my wildest expectations.


In just under two years, our IH Ambassadors have touched over 1,200 worthy groups. This summer we are going to raise $100,000 in 100 days.

It’s our Extraordinary Summer of Giving and we’d love for you to be a part of it with us. We are delighted to support any 501c3 charity.