Whether she's singing top 40 hits, sharing her expertise about Barbie dolls or talking about the latest book she's read, just about anyone who meets Lauren Carter is sure to remember the "little girl in the pink wheelchair."
Many Americans will soon get the chance to know the 8-year-old from Oceanside, Calif., with the contagious smile. Lauren is MDA's 2000 National Goodwill Ambassador, and she and her family will travel the country to represent the Association at various events and fund-raisers throughout the year.
Lauren replaces Aubrey and Nicholas Olson, a brother and sister from Pine City, Minn., who were MDA's National Goodwill Ambassadors for 1998 and 1999.
Lauren is the daughter of Ken and Traci Carter, and big sister to Dalton, 5. The Carters live on the U.S. Marine Corps base at Camp Pendleton in Southern California, near San Diego.
Lauren has spinal muscular atrophy, a disease that was diagnosed when she was a toddler. She uses a power wheelchair for mobility, and it doesn't prevent her from enjoying a wide variety of typical little girl activities.
A third-grader at San Raphael Elementary School, Lauren ranks reading highest on her list of school subjects, with scary books like the popular series "Goosebumps" her favorites. She also enjoys spending free time with friends from school, but will only give a sly smile when asked about boyfriends.
Lauren loves playing her popular music CDs; the Backstreet Boys and Britney Spears are favorites. She even has a stereo with a microphone that lets her sing right along with the performers. She also likes to draw and paint, play on the computer and have fun with her dog, Lance.
Living in Southern California gives the Carters the unique opportunity to frequent the many amusement parks in the area. At one point, the family was visiting Disneyland on a weekly basis, making good use of discounted military passes for the park, as well as Disney's special assistance boarding pass for people with disabilities, Traci said.
The Carters' family life includes a "typical sibling rivalry" between Dalton and Lauren that sees the two hugging one minute and arguing the next, according to their parents.
"He doesn't cut her any slack, and she doesn't give him any either," Traci said.
"We're the same family as anybody else, except for that apparatus there," reminds Ken, pointing to Lauren's wheelchair.
At school, a full-time aide helps her with transfers and other physical needs throughout the day.
"It's important for her to be just another kid," Traci said. She encourages the aide not to hover over Lauren so she can be as independent as possible. "The school system has been really good for us."
The support and love that overflow in the Carter family caught the attention of MDA National Chairman Jerry Lewis.
"Lauren is a very bright young lady, and it's obvious that she is surrounded by a warm, supportive family. She immediately captured a special place in my heart, and I'm sure she'll have the same effect on others," Lewis said in announcing the family's selection to represent MDA this year.
A Marine master sergeant, Ken has been in the Marine Corps for 19 years, and the family has lived on a variety of military bases in Southern California. Traci, who at one time was in the Army, is now a homemaker who is an active volunteer with Lauren's Girl Scout Brownie troop, the PTA and the children's schools.
Although the Marine Corps is Ken's employer, the Carters say that being a military family is much more than just working for a large organization. It's like being part of a big family whose members take care of each other.
The biggest effect of military life is felt, however, when Ken is sent away on lengthy missions.
"If he has to go on deployment for six months, or there's war, that's when the differences are most evident. My husband is gone. We're separated from him," Traci said.
In fact, Ken was in Japan, 5,000 miles away from his family, when doctors diagnosed Lauren's neuromuscular disease in 1993. Learning about the disease was a devastating time for the Carters, but they found valuable support and information through MDA and within their military "family," they said.
Ken's fellow Marines have been especially supportive as the Carters struggled to understand Lauren's disease, and the family has become part of a network of military families who have children with disabilities.
Families who have "been there, done that" helped to provide the Carters with details for navigating the maze of doctors and services. That information can only be found with experience, they said.
"A lot of people will ask, 'How is your daughter doing?' I think it's definitely more family-oriented than other corporate companies," Ken said, adding that it's usually not a problem for him to get time off to attend Lauren's doctor appointments or other special events.
In addition, the Carters are part of the military's Exceptional Family Member Program. The program ensures that, regardless of where Ken is sent, the rest of the family will remain in a location where their medical needs can be met.
Giving Back, Helping Others
The Carters have jumped at virtually every chance to get involved in MDA events. They've made appearances at the 1997 pre-Telethon Emcees Briefing and on the 1997 and 1998 national broadcasts of the Jerry Lewis MDA Telethon. In 1999, the Carters appeared on the San Diego-area broadcast.
Lauren has attended MDA summer camp — an experience she described as lots of fun — and the family is involved in local MDA activities as well.
Lauren proudly recalls the time she helped local fire fighters collect donations.
"We were doing this Fill-the-Boot thing to get money for MDA, and I got a 50," she said, her bright eyes opening wider at the mention of the big bill.
The Carters' 2000 schedule includes attending MDA sponsor events in New Orleans, Miami and Denver, plus an appearance on the Telethon on Labor Day weekend in Los Angeles.
The Carters view their ambassadorship as a way to give back to MDA, and an opportunity to help guide other parents who find themselves facing the fears and questions that a neuromuscular disease can bring.
"We try to let a lot of people know about our situation. That way they know if they have any questions, and if we don't know any answers, we probably know somebody who does," Traci said.
Ken said he advises others dealing with neuromuscular diseases to visit MDA's Web site (www.mda.org), as his family continually finds good advice and the latest pertinent medical news there.
As Lauren serves as the first National Goodwill Ambassador of the new century, the Carters feel they have an opportunity to put a memorable face to MDA's efforts.
"This is our chance to be able to help others out, and to let them know what MDA means to us as a family, between the medical research and the doctors," Ken said. "It's our way to say thank you to MDA and to let others know that the money is going to good use... You're helping out the people you live next door to."
They've seen firsthand how volunteers for MDA draw extra motivation from meeting people who are affected by neuromuscular diseases.
Ken remembers the positive reactions of people who met Lauren at an Aisles of Smiles promotion at a local grocery store. Meeting her reminded them that their efforts and dollars were helping someone special, he said.
"Now they can say, 'Remember that little girl in the pink wheelchair?'"