Charlotte Catholic juniors Lindsay Kunik and Holly Walsh started the nonprofit Butterfly Kisses in August 2010 to benefit terminally ill children, but their journey started in eighth grade, when they got to know Ellie Potvin.
Ellie struggled with Stage 4 rhabdomyosarcoma for two years before her death at age 8 in 2010.
Rhabdomyosarcoma is a relatively rare form of cancer that occurs in the soft tissue anywhere in the body, according to the National Cancer Institute.
Walsh, 16, started following Ellie's story through a blog kept by Ellie's mother, Amy Potvin.
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"I told Lindsay about it, and we started doing a lot of projects for them," Walsh said. "That is when we first began care baskets."
Kunik, 17, said, "We also started a Twitter account about them, and it ended up having 25,000 followers. It is still active even though Ellie passed away in 2010. That was the inspiration for Butterfly Kisses."
The organization's name comes from Ellie's favorite creature.
Walsh and Kunik's Twitter account spread Ellie's story worldwide. When the two put together a basket of gifts for Ellie, people from all over the world sent items. Celebrities including cyclist Lance Armstrong joined the Twitter feed and became involved.
For two years, Walsh and Kunik brought Ellie gift baskets, made collages for her and spent time with her.
"She touched me with how thankful she was for everything - for everything!" Walsh said. "I remember after walking out of Ellie's Celebration of Life ceremony and thinking, 'We need to find more kids to do this for.'"
After Ellie's death in June 2010, the girls met with a lawyer to set up their nonprofit organization. Once it was official, they found out about other terminally ill patients locally and out-of-state through the Twitter feed.
Using all their baby-sitting money, the girls shopped at places like Learning Express and Target to fill care baskets for the children.
Butterfly Kisses received tax-exempt status in March 2011; with this status, the organization now can accept donations.
"We want to make it so everyone can help," Kunik said. "You don't have to make a couple hundred dollars donation to help - you can make a card, spread the word, donate a toy. There are many things to make a difference."
A woman's mother passed away from lung cancer, and in lieu of flowers she asked that donations be made to Butterfly Kisses.
One woman knitted child-size hats that now are included in the care baskets.
For local children, Kunik and Walsh buy giant buckets from Learning Express with the child's name on the front. They fill the buckets with age-appropriate items, often getting suggestions from the child's family. If the sick child has siblings, they include gifts for them as well.
"The kids are so excited when we go to visit them," Kunik said.
When a child does not live nearby, Kunik and Walsh send smaller packages and cards.
The girls have gotten many preschool and elementary school classes to make cards for the children they serve. The girls also make collages, sometimes featuring the child and his or her family; other times the collages may contain photos of the child's favorite activity or interest.
So far the girls have helped 36 families. Each weekend, Kunik and Walsh get together to purchase items, fill baskets and make collages, usually in Kunik's bedroom in the Ballantyne neighborhood of Bridgehampton. The room is perpetually filled with bags of goodies and photos of children they have worked with. More often than not there are collages drying in the bathtub.
The girls also have started a cancer awareness club at Charlotte Catholic and baby-sit frequently to earn money, which goes right back into Butterfly Kisses.
As part of the awareness campaign, the two sell bracelets for $3. One reads, "Because We Care ...Butterfly Kisses." The other states, "Kids Get Cancer, Too. 46/7." The 46/7 signifies the number of kids diagnosed with cancer in the U.S. every day and the number who die from cancer each day.
"It's easy to see a St. Jude's commercial and think, 'This is just too sad,' and flip the channel," Kunik said. "But nothing changes if you just flip the channel. When you're standing at a funeral in front of a little pink coffin - well, it's just not right."
The girls maintain high grades in honors and AP classes at Charlotte Catholic, and they continue to expand Butterfly Kisses. They hope to hold a walk-a-thon fundraiser sometime this year that will benefit St. Jude's Research Hospital and Butterfly Kisses.
"The color for childhood cancer is gold, but most people don't know that," Walsh said. "If you see a pink ribbon, you know it's for breast cancer. We think childhood cancer should be the same way."