Kehrs Mill community raises money, hope for girl with rare disease

By DIANE E. SAMSON

The song “Make a Wave,” says to throw a pebble in the water and make a wave. Even a small pebble can start an ocean moving.

That’s exactly what happened six months ago when a Girl Scout troop from Kehrs Mill Elementary decided to start helping Tori Scott, a first-grader who has Neurofibromatosis 1 (NF1), a genetic disease that causes tumors to grow on nerve cells in the body.

Six months ago, one second-grade girl from Girl Scout Troop 1779 decided that instead of having a birthday party, she would have a lemonade stand and bake sale to benefit Tori. That was just the beginning.

“When people meet Tori, they are forever changed,” said Christine Meisner, whose Girl Scout troop began helping the family a few months ago with monthly projects including meals and other needs. “She is such a spark of energy and, honestly, a ball of love.”

Word has spread about the brave little girl who endured brain surgery in February and is now halfway through 15 months of chemotherapy.

“She is strong, brave and almost always happy,” said her mom, Michelle Grigaitis. “She doesn’t complain about her treatments or being sick. She smiles all the time.”

Last year, the ripple of kindness moved through Kehrs Mill.

“Tori is a vibrant little girl who has so much spirit and fight within her,” said Dr. Christina Garland, Kehrs Mill principal. “She has made such a big impact on our school community over the last year. She always has a smile on her face no matter what her circumstances are.”

Even though she is no longer a student at Kehrs Mill (she’s home schooled), the community continues to reach out to her.

“What is amazing,” Meisner said, “is the number of people who have taken it upon themselves personally, outside of school to help.” (Learn more at torigaga.com.)

This fall, the ripple grew into a bigger wave when Meisner sent out an email asking for help for the family by creating a care calendar that allows people to pick a day to provide a meal for the family. In the email, she included some details about Tori including the fact that she loves “Dancing with the Stars” and “by the way, if anyone knows a way to get them tickets, please call Michelle, Tori’s mother.”

One Kehrs Mill family acted on that email. Larry and Danielle Kutun bought Michelle, husband, Stephen, and Tori plane tickets, put them up in a hotel and got tickets for “Dancing with the Stars.”

Talk show host Ricki Lake, a contestant on the show, saw a video of Tori on Twitter that showed how much she enjoyed the show. When Lake discovered that Tori was in town, she interviewed her for the Nov. 26 broadcast. She also provided VIP privileges for the family to watch “Dancing with the Stars” and meet the stars from the show.

Additionally, Lake has vowed to help raise awareness for NF.

“That’s when you know you’re in a community that doesn’t just read something and hit the delete button,” said Meisner. “I never expected that to happen.”

Meisner said the wave sweeping through the community keeps getting bigger. In November, the girls in her troop (not as Girl Scouts but as Team Tori members) held a fundraiser at Orange Leaf Frozen Yogurt in Ellisville and raised $1,116 for Tori.

“The crowd was out the door,” Meisner said.

While all this work has brought the community together for one little girl, Meisner said that the girls in the Scout troop are learning lifelong lessons, including having compassion for others, how to treat people who look different than you, how to include others and understand the difference between needs and wants in their own lives.

“They are feeling rewarded,” she said. “When you do something for someone else, you’re the one who gets so much out of it.”