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Lisa Lori, Greenwich resident and owner of The Perfect Provenance (a luxury lifestyle store and café at 47 Arch Street in Greenwich), was overjoyed to be pregnant with her first child 18 years ago. Suffering from an auto-immune disease (she is now in remission), she was told her condition could not be passed on to her child. And it wasn’t.
But Lori’s firstborn son, to the best that anyone has been able to deduce, was exposed to higher antibodies than usual in utero and born with a very rare condition causing facial paralysis. Doctors told her the chances of this happening again were practically nil in her second and third pregnancies. They were wrong. Both times.
“They presented as having very little muscle functions in their face, with difficulty speaking and chewing, and they couldn’t smile,” said Lori of her three sons.
“Everywhere we went people stared. The insensitivity of complete strangers was boundless.”
Doctor after doctor told the family that nothing could be done. Lori and her husband even funded a study that found roughly 20 to 30 similar cases worldwide in the last 18 years.
Finally, after eight years of seeking treatment, a pediatric surgeon, who pioneered muscle transplant surgery for facial paralysis, was found in Toronto and agreed to take on their case.
“He took muscle from their thighs and transplanted it in two surgeries,” said Lori. “We would do a surgery, take three months to see if it worked, and then do the second surgery. In four years we actually did 8 transplants–over 20 surgeries collectively.”
The change in her sons, now 18, 16, and 15, was miraculous and transformed their lives. Armed with hope, Lori wanted to give back to other children born with a facial condition.
Through the Toronto-based plastic surgeon, Lori learned of Operation Smile, and she and her husband hosted a fundraiser for the group, raising $85,000 that night alone.
Over these last 10 years, Lori has brought more than $2.5 million to Operation Smile through projects such as the Three Little Bears (a $240 purchases a gift of surgery for a child and sends a teddy bear to one that has undergone treatment) and the Smile Collection (each purchase of a t-shirt, tote, jewelry and more from her store means a donation to Operation Smile). And every year she hosts a big fundraiser in Greenwich for the group–this year’s is November 16.
Since 1982, Operation Smile has helped more than 270,000 people worldwide receive life-changing surgical care in their communities. Lori and her sons have even gone on two trips to Colombia and Panama, visiting Operation Smile facilities and families it has helped.
“It helped my children to understand that they weren’t the only ones in life with challenges.” said Lori.
“We always say that when you give money to these families, you’re giving their child and family a chance to be part of the community and life; it’s such a wonderful thing. We have a rare circumstance that was very difficult for us, but through perseverance we found a solution in western medicine that could help us, but not everyone can.”
For more information and to donate, visit Operation Smile.
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