Young arthritis advocate not afraid to speak up
By NADIA MARIA SMITH
CS&T Staff Writer
STRAFFORD — Maria Lefchak is not your typical 12-year-old.
She has become a powerful advocate for the Arthritis Foundation and feels just as comfortable speaking with her peers as she does speaking with U.S. senators or radio talk show hosts about the foundation and her own experience with the painful disease.
Maria was diagnosed with juvenile arthritis when she was 3 years old and has arthritis in her hips, ankles, knees, wrists, right elbow and jaw. She gives herself two shots a week and takes oral medication to control the disease.
When she has flare ups, it means visits to the hospital, injections in her joints, blood work and more medication, but Maria takes it all in stride.
“I know I can put up with little bumps in my future, because I’ve dealt with such a big one at such a young age,” said Maria, a member of Our Lady of the Assumption Parish in Strafford.
Maria will be starting seventh grade in the fall at Country Day School of the Sacred Heart in Bryn Mawr, where her school community has been very supportive of her advocacy and fundraising work, she said.
They have also been very impressed and inspired by her work, which is why Kally Selimis, the school counselor and Maria’s homeroom teacher, nominated her for the National Liberty Museum’s Commerce Bank Young Heroes Award. She will accept it Aug. 21 at the National Liberty Museum in Philadelphia.
When Maria isn’t studying, playing lacrosse, singing for the Sacred Heart Choir or organizing teams of her peers for the Jingle Bell Run, a fundraiser for the Arthritis Foundation held twice a year, she’s on the road advocating for herself and others.
“It’s important for me to be an advocate because I can’t expect other people to advocate for me if I don’t advocate for myself first,” she said.
Her advocacy work includes petitioning Congress to pass legislation that would give more funding for research as well as building awareness about the fact that “children get arthritis too” through television, radio, newspaper and magazine interviews, she said.
“There are 46 million people in the country with arthritis and it’s the leading cause of disabilities in the U.S., but researchers know so little about it. They don’t know why people get arthritis,” she said.
Maria traveled to Washington, D.C., and Harrisburg this year and last to urge passage of the “Arthritis Prevention, Control, and Cure Act of 2007.” The bill will expand efforts to discover and implement new ways to prevent, treat and care for patients with arthritis and related rheumatic diseases. It is under review in committee.
She also attended the February 2008 Arthritis Advocacy Summit last February in Washington, where she spoke to government officials about the need to support the bill and do more to assist the millions of Americans who suffer with the disease.
“Maybe I was given this arthritis for a reason, to teach people and help make people aware because there are so many in the country with arthritis and there are also so many children with arthritis — there are 300,000 children with arthritis in the U.S.,” Maria said.
Reflecting on the cross of Christ, Maria believes arthritis is her own cross to bear so that she can help others through it. Her faith, family, friends and school community help her find strength and courage, as well as St. James, the patron saint of people with arthritis, she said.
“I know he might be looking down on me.”
CS&T staff writer Nadia Maria Smith may be reached at npozo@adphila.org or (215) 965-4614.