"What
a Year" is an article about the adventures of MDA 2002-2003 National
Goodwill Ambassador Mattie J.T. Stepanek. For these nine former MDA national
ambassadors, life is still an adventure.
Drew Johnson,
1991-92, Zachary, La.
Drew, 18, has achieved the desire of every teen — his own car, an
adapted black minivan. Drew is an active
speaker at area churches, stays involved with MDA’s Be a Star
program and plays the bagpipe. Drew, who has Duchenne MD, will start college
this fall and wants to be a youth minister. (You can read more about him in “Five
for Freedom.”)
When he’s bummed out: “I pray, look in the Bible and try to find
a verse that lifts me up; 2 Corinthians 12 lifts me a lot. I pray that God will
give me hope to get through it.”
Lance Fallon, 1993,
Baltimore
Lance, 16, plays football, hockey and baseball in wheelchair
leagues. A sophomore in high school, Lance, who has SMA, is a brainy, creative
jock, participating in his school’s Academic Club
and Animation Club. He and his brother Jacob, 13, recently were
honored by a civic club for their work on behalf of MDA. Keeping the ambassador
flame burning, Lance’s sister Hannah, 4, is the Maryland MDA Goodwill
Ambassador.
When he’s bummed out: “I just do something. I don’t usually feel
down so much as bored. I just think about something I have to look forward to
and that helps.”
Kelly Mahoney, 1994,
Phoenix
Kelly, 13, is into the creative arts, taking piano lessons and
belly dancing, as well as being a writer and poet. Although she
has SMA, she still walks, with the help of bright purple AFOs
(leg braces). She started eighth grade this year at a new school and is doing
well.
When she’s bummed out: “I think of having SMA as having a brick
wall in the middle of my road to success. But just because you have a brick
wall doesn’t mean that there’s not a bypass. Even though the bypass isn’t the
scenic route, it’s better than turning around and going back.”
Tomás Díaz, 1995, Houston
Tomás, 14, is a writer, artist and Play Station jockey (favorite
game: Kingdom Hearts). A ninth-grader at a Jesuit prep school in Houston, he
enjoys hanging out with his brother at home,
crafting fantasy stories and surfing the Web. Tomás, who has
SMA, also helps out at MDA events.
When he’s bummed out: “If I’m bummed out about a certain thing, I
push it out of my mind for a while so I can cool down, then I try to deal with
it later. If I’m just bummed out for no reason, I think about the stories I’m
writing, or try to think about something else.”
Benjamin Cumbo, 1996-97,
Upper Marlboro, Md.
Benjamin has packed a lot into his 15 years of life — designing
monkey bars for kids with disabilities and appearing before the U.S. Senate to
ask for more funding for muscular
dystrophy research. Last year he became an Eagle Scout, and for
his Scout project, he collected 560 books for needy children. Benjamin, who has
a form of muscular dystrophy, also volunteers in the summers for MDA.
When he’s bummed out: “I try to look at the good things rather
than the bad things. You can’t be moping around. You gotta look at the good
things.”
Aubrey and Nicholas
Olson, 1998-99, Pine City, Minn.
This brother and sister, who have Friedreich’s ataxia,
like to stay busy!
Aubrey, 16, is a 10th-grade honor roll student who takes piano lessons, acts in
school plays and plans to go on a
church trip this summer. She plays saxophone in the school band,
participates in Speech Club, skis with an adaptive program, and hunts with her
dad and grandfather. Aubrey’s looking forward to getting her driver’s license
and driving a van with hand controls.
Eighth-grader Nicholas, 14, is in Speech Club, manages the school
hockey team and skis. He loves fishing, snowmobiling, music, deer hunting and
lounging in the hot tub. Last summer Nick was walking his service dog Kodi when
his wheelchair was hit by a car, severely breaking both of his
legs. Kodi escaped with minor injuries but Nick has been
in and out of the hospital on a long road to recovery.
When Aubrey gets bummed out: “I hang out with my friends and talk to them about
what’s bothering me.”
When Nick gets bummed out: “I think about my grandpa and
everything he’s been through (he’s had a lot of injuries) and the way he
handles his problems.”
Lauren Carter, 2000,
Jenks, Okla.
Lauren, 11, recently moved from California to Oklahoma when her
dad retired from the Marine Corps after 21 years. She’s happy at her new
school, where she’s the Red Cross treasurer. Lauren and her family participate
in MDA events in the Tulsa area. She has SMA.
When she’s bummed out: “If I feel bad about anything, my family
always makes me feel better.”
Sarah Schwegel, 2001,
Kirkwood, Mo.
Sarah recently underwent scoliosis surgery on her spine. She’s
had to change the way she does some things because she can’t bend the way she
used to. The 9-year-old enjoys art, computers, music, reading, science and
horseback riding, and hopes to become a veterinarian. Sarah, who has SMA, is a
junior Girl Scout and sings in her church choir.
