Page 102 - Parents Magazine (December 2019)

LIFEÑPhi lanthropy

Her friend had an extra, and they
drove over to the family’s apartment to
When Deborah Vauclare
set it up. “The apartment was so empty, I learned that her son
knew something was wrong,” she says. would likely not live past
age 10, her BFF
“I could only talk to the mom using eye Emily Rogath Steckler
contact because of the language barrier.” (below) started a
charity to raise money
Once the baby was playing, she to research a cure.
excused herself to use the bathroom.
“I didn’t see any soap, towels, or diaper
cream,” says Whitehill. “That’s when
I realized this family’s needs extended
way beyond a piece of baby gear.” She
walked around the apartment with the
family, making a list of what they
needed. When she got back home, she
posted the list on her local mom’s
Facebook group. Everything was
purchased. “This was the beginning
of Miry’s List,” Whitehill says.
She began meeting other refugee
families in Southern California and
quickly realized that many of them come BISOUS FOR LÉO
to the U.S., fleeing persecution and
violence, only to find little support. “I had a million questions in my head
“I talked to an employee at a resettlement about this disease, but I couldn’t get the words out.”
agency,” Whitehill recalls. “She told
me that she used to be responsible for PURPOSE Fund a cure for infantile neuroaxonal dystrophy (INAD),
20 families when she started her job; now a rare neurodegenerative disease that affects children
she handles 200.” Whitehill wanted to FOUNDED 2018
help all the families slipping through the
cracks but knew she couldn’t do all the Emily Rogath Steckler and Deborah Vauclare are best friends. They went
to high school and college together, then moved to New York City together.
list making and delivering herself.
They thought they would do everything together, until Vauclare got a job in
She decided to start Amazon Wish
Paris and fell in love with a Parisian. “It was a fairy tale that eventually took a
Lists for these families so necessities
sharp turn,” Rogath Steckler says.
could be delivered straight to their
When Vauclare’s Paris-born son, Léo, turned 1, he began to regress
homes. Her operation grew fast, and developmentally. Vauclare was seven months pregnant with her daughter
today Miry’s List has provided 350-plus when tests finally diagnosed Léo with INAD. “I had a million questions in my
families in 13 states with material goods, head, but I couldn’t get the words out,” she says. “I was a wreck. I had to go
along with social support like playdates on bed rest for the rest of my pregnancy.”
and English tutoring. “I’ve never been so Rogath Steckler happened to be in London with her kids, ages 3 and 5,
motivated at any job,” says Whitehill. “It when her friend received this news. She went to Paris to comfort her and took
a picture of her own daughter kissing Léo. “When I came home to L.A., that
gives me more energy to care for my kids.”
photo haunted me,” she says. “I couldn’t get Léo out of my mind. I thought,
The Kashefis, from Afghanistan,
‘What if we could kiss him and make it better?’ ” About a month later, Rogath
wouldn’t have stayed in the U.S. were it
Steckler pitched her idea to Vauclare of starting Bisous (French for “kisses”)
not for Miry’s List. The resettlement
for Léo to support the INADcure Foundation. In the past year, the charity has
office housed Bashir, his pregnant wife, raised more than $200,000, and celebrities like Gal Gadot, Chelsea Handler,
Naseema, and their 2-year-old in a small and Eva Longoria have posted on Instagram about the cause.
apartment with 14 other people. On the But their success is tempered by the fact that Léo’s health is deteriorating.
sixth day, sick and tired, they left. They Most kids with the disease don’t live past age 10. “A year ago, he could still
had been sleeping on the street for three walk with his walker, pull himself up, sit unaided, crawl, turn over, eat regular FROM TOP: TODOR TSVETKOV PHOTOGRAPHY; COURTESY OF THE SUBJECT.
nights when a neighbor told them about foods, and feed himself. Today, at age 3, he can no longer do any of that,”
says Vauclare. “He wakes up screaming throughout the night. We don’t
Whitehill. One phone call later, she set
know what is bothering him or how to calm him.”
them up at a motel for a month and
Scientists have already discovered the gene mutation responsible for the
saw to it that three meals a day would
disease, one that is shared with some forms of Parkinson’s, and are using
be delivered to their room. Says Bashir,
the new funding to study treatments in mice and adults who have a mutation
“Miry told us: ‘I am not next to you. in the same gene. Says Vauclare: “We will never give up hope.”
I am behind you, in every step of life.’ ”

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