Nonprofit group supports network for parents of kids who have ‘limb differences’
By Catherine Kavanaugh
The Daily Tribune (Royal Oak)
ROYAL OAK, Mich. (AP) — If you see him perform, Tony Memmel’s blend of folk, rock and Americana music will probably hold your attention long before you notice he plays guitar without a left forearm.
The 27-year-old from Milwaukee, Wis., has that effect on audiences, especially in small venues like the Oak City Grille, Royal Oak, where he has given concerts sponsored by the Lucky Fin Project.
With a guitar pick taped to his upper left arm, Memmel plays from a personal, passionate set list that has critics predicting great things on the horizon for the singer/songwriter.
“He’s magnetic,” LFP founder Molly Ryan Stapelman of Royal Oak told The Daily Tribune of Royal Oak. “Then his song ends and he wipes his brow and people do a double take. They just watched him for 15 minutes and didn’t notice he’s missing a hand. It’s kind of fun to catch people.”
Memmel and his band recently released a theme song for the LFP — the nonprofit group Stapelman started in July 2010 as a support network for parents of children with “limb differences.”
“Tony gave me the best gift ever,” Stapelman said. “The chorus is so catchy and oh, I just love the lines: ‘When the day is feelin’ long and the sky is gettin’ dark, you have got to let your light shine.
Know how great you are.’ “
He could have gotten away with throwing LFP T-shirts to his crowds but Memmel said he gets so much more than tour sponsorship from LFP. To give back, he is donating half of all download proceeds for “Lucky Fin Song” to the group.
“Every day something cool is posted or I get a sweet drawing from a child with a hand or limb difference,” Memmel said. “Being involved with LFP is awesomely positive.”
The theme song is the just the latest in a wave of exciting steps forward for the group liked by 4,400 Facebook users. LFP also named a board of directors, sponsors rising stars in sports, and has a growing Internet following that is evolving from a support network into a true community.
Stapelman’s daughter, Ryan, 5, was the inspiration for the LFP and its goal to show that people have differences, not disabilities. She has symbrachydactyly — a little understood, congenital anomaly that usually results in one or more fingers failing to develop on one hand.
With a thumb and four nubbins on her right hand, Ryan knows no limits. She climbs tress in princess gowns, plays soccer, and strings together beads for the trademark LFP bracelets. Her can-do attitude led to the LFP motto: “Ten fingers are overrated.”
Memmel attests to that. He started teaching himself to play guitar when he was in middle school. It took a lot of determination and eight years to fine tune his method.
“I had a friend who was an accomplished guitarist and I was getting into music and listening to rock,” Memmel said in a phone interview. “I wanted to write and play my own music. I convinced my parents to split the cost of a guitar with me. Through trial and error, I came up with a way to play when I was 21.”
His breakthrough turned out to be Gorilla Tape — a super sticky adhesive likened to duct tape on steroids.
“With it I could play in live settings under stage lights and not have my pick sweat off,” Memmel said.
He is getting ready to tour again in March and he can be sure some of the people in his audiences will also be fans of LFP, who take advantage of meet-up opportunities like concerts and picnics.
Stapelman marvels at the ripple effect that started at her kitchen table 2 1/2 years ago. That’s where she started making Lucky Fin bracelets to celebrate how “wonderfully made” children with limb differences are. Each bracelet is centered with an orange and white bead that Ryan likes. It reminds her of the Disney clownfish Nemo, which navigated an ocean of challenges with its lucky fin in the animated film “Finding Nemo.”
Almost 4,000 bracelets later, LFP is making a bigger splash by sponsoring not only Memmel but fighter Nick Newell, the Xtreme Fighting Championships lightweight world champion.
The left arm of Newell, 26, ends just after his elbow from congenital amputation, a condition that causes part of the limb to detach in the womb. Regardless, he became the XFC’s undefeated belt holder with the LFP logo on his fight shorts and banner. Newell now is fighting to compete in the Ultimate Fighting Championship.
Stapelman cheers on her ambassadors’ careers and what their accomplishments mean to the 2 million Americans with limb differences.
“They are examples that everything is possible,” she said. “It’s great to show people with newborns, this is what your kid can potentially be doing at 20.”
Stapelman herself is an example of tireless advocacy. She has made and shipped 3,900 Lucky Fin bracelets. She uses the money from bracelet donations and sales of LFP bumper stickers and shirts, to sponsor Memmel and Newell, help send children to Camp No Limits, and create brochures about limb differences for hospitals in the United States, Canada, United Kingdom, Australia and Puerto Rico.
Stapelman also heads up LFP’s volunteer board of directors, which includes Memmel’s mother, Katie Kolberg Memmel, who wrote a book last year called “Five Fingers, Ten Toes: A Mother’s Story of Raising a Child with a Limb Difference.”
Stapelman, who has three daughters, also maintains the group’s website and Facebook page, which has followers in all 50 states and 20 countries.
At least once a day she posts inspirational stories and quotes, such as “It’s not what happens to you that matters most, it’s what you do about it.”
The website has more than 300 pictures, too, in its Lucky Fin photo album, mostly of smiling children wearing their bracelets adorning partially formed arms and hands.
“I hear about people in waiting rooms going to see a doctor and they take off their Lucky Fin bracelet and pass it on to new parents,” Stapelman said. “They tell them they’re in a cool exclusive club. That’s what I mean about the Lucky Fin family. That’s how we’re pushing 5,000 Facebook fans. People embrace it with enthusiasm and say it is awesome to be part of it.”
Stapelman is particularly pleased when parents-to-be find out about the LFP and turn to the website to get educated and prepared.
“They see this isn’t the horrible thing they thought it could be,” she said. “They see their child will be fine. They get over it. They get reset for the amazing time it is when you’re having a baby.”
Other parents learn about their baby’s limb difference in the delivery room because it didn’t show up on ultrasounds. They usually find out about Stapelman’s group when they are referred to specialists and given LFP brochures. The LFP family embraces them.
“I understand their shock,” Stapelman said. “I want them to know what they are feeling is normal. They feel it is unfair. They feel guilt and they wonder if it is their fault. They feel angry because they did everything right during their pregnancy.”
They also have questions. Should they be looking into occupational therapy? What about tutoring? How about prosthetics?
Stapelman’s answer is no, no, and no — not now anyway. She recommends parents focus their attention and energy on the arrival of their newborn rather than worry about events that may or may not be necessary in the years to come.
Then, there are the successes she gets to share and the dreams she helps further. Last week LFP became the first contributor to the Never Say Never Foundation, which is raising $8,000 for Paralympian athlete Regas Woods (aka Legz) to get new running feet and legs.
Stapelman was just as proud to add a picture of a 7-year-old girl named Ruby from Connecticut wearing a LFP bracelet while on the gymnastic bars.
“Her parents told me it would be an honor to be in the photo album and I just cried. It never gets old,” Stapelman said.
Such requests are a simple reminder she is achieving the LFP goals to celebrate, educate, support and unite.
What’s next?
LFP friends are trying to get Memmel and Stapelman on “The Ellen DeGeneres Show.” The comedian was the voice of Dory in “Finding Nemo” and there is talk of a Disney sequel.
“Can you imagine if Dory herself gave the Lucky Fin project a shout out?” Stapelman asked.
