Young girls often promise to be best friends forever. But forever usually lasts a few years for most BFFs.
Not so for these Batavia third-graders.
Alice Neville and Regan Recklaus are the type of friends that renew one’s faith in that youthful promise.
They don’t even attend the same school. Regan is 9 and attends H.C. Storm Elementary while Alice, 8, attends Alice Gustafson School.
Friends since they were babies — their mothers Cari Neville and Tracy Recklaus are best friends — the two girls are devoted to each other. Cari described the daughters’ relationship as “symbiotic.”
Regan said about Alice, “I trust her. She is one of my great friends.” When Alice talked about her buddy, she simply said, “She is very nice.”
Nice is a simple way of saying Regan always has Alice’s back, and that is especially important as the latter lives with a debilitating disease.
Alice has a form of muscular dystrophy, a group of genetic diseases that cause a progressive weakness and degeneration of the skeletal muscles that control movement. Alice was diagnosed with the disease when she was 3.
Duchenne MD is the most common form of MD found in children with a usual onset between 3 and 5 years old.
Having MD has never created an awkward wedge between Regan and Alice, according to their moms.
“The MD just doesn’t come up when they are together because they know each other so well. They respect each other’s needs,” Tracy said.
That respect goes beyond giving each other space and time for activities and other friendships. The two are on a mission to raise money to fund MD research and to raise awareness.
Even at this young age, the girls, along with their families, already have participated in 5K run/walks through the regional Muscular Dystrophy Association. The next one is scheduled for later this spring. Alice has run her own neighborhood lemonade stands during the summers.
“MDA is very much a part of our lives, too,” Tracy said.
The walks are not enough for Regan and Alice, though, as the two look for more ways to involve more friends and the community in their mission.
One such recent fundraiser grew out of a conversation at the kitchen table. They proposed hosting in one of their basements an afternoon of bingo. The girls would make buttons and popcorn to sell to raise money.
Well, the idea quickly spread to more than “a few friends” as the girls started talking to more kids at their schools and handing out fliers. Alice’s old Brownie troop wanted to help out, and Regan’s soccer team joined up.
Not to be outdone, Cari and Tracy reached out to the Batavia Mother’ Club, a group they are involved with, to spread the word.
And people in the community did, too, as more groups and residents committed to support and attend the event. Suddenly, a simple afternoon of bingo for some kids was turning into a much bigger deal. Alderman Alan Wolf and his family offered their support as well.
“I started thinking ‘OK we are going to need to move this out of our basement,’” Tracy laughed.
As the moms realized they would need to rent a hall to hold the event, they also knew they would need to expand the offerings from bags of popcorn and buttons.
Cari and Tracy worked the phones and their Facebook pages to get local businesses to donate prizes to raffle, and the response was impressive and varied from music lessons to jewelry to wine baskets.
Alice and Regan enlisted many of their friends to help bag prizes and make buttons.
Still, after four to five weeks of planning, the Recklauses and Nevilles found themselves 10 days out from the big bingo day with no place to hold it. Assistance arrived just in time.
A secretary at Gustafson School and a member of Bethany Lutheran Church made a few calls to secure the church hall.
“(The church) was very generous,” Tracy said.
On March 23, more than 100 people came out to Bethany Lutheran for an afternoon of bingo and fun and community kinship all motivated by a common cause — to help a local girl named Alice raise money and awareness to fight a terrible disease.
“It couldn’t have gone better,” Tracy said. “None of us have any experience at all with planning fundraisers, and it was just great.”
More than $3,500 was raised, some of which will help support MDA summer camps, according to Cari. Alice looks forward to going every year.
The fundraising, though, was one goal of the event. The other was spreading an ongoing awareness of MD, and the toll it takes on children and their families.
“(The community) can put a face on it now that they have met Alice,” Cari said.
Two parents followed up the bingo day by calling to find out how they can run an awareness campaign at their children’s school, she said.
“In the goodie bags we gave out, there were wrist bands that said ‘Love life,’ and I now see kids every day wearing them at school,” Alice said.
Regan is already thinking about hosting another big fundraiser next year.
The two moms couldn’t be prouder of their daughters, these girls who appear to truly be committed to that BFF pledge.
“Regan has been there all along, learning along with Alice on what it is like (to live with MD),” Cari said.