The Port Arthur News
PORT ARTHUR —
The little girl in the picture has plump cheeks and a wide smile that shows some permanent teeth among a mouth still full of baby teeth. At first glance she seems to be the picture of happiness. But a closer looks reveals something about her posture that’s not quite right. This is Allie, a 7-year-old who has lived her life with muscular dystrophy, a disease that involves muscle weakness and loss of muscle tissue. And it gets worse over time
I have Allie’s picture because the Mid-County chapter of the Muscular Dystrophy Association is raising funds to help kids. Included was a letter from Casey, Allie’s mom. “We found out Allie had spinal muscular atrophy when she was only 17 months old,” Casey wrote. “We were shocked and I was scared. Here is this beautiful baby girl and all of a sudden her future was changed.”
Many of us who are parents give thanks every night for our children. For most of us, our children are healthy, growing up with the everyday challenges but strong and curious and meeting life at breakneck speed. MDA, through its summer camp program, is helping children like Allie have experiences they otherwise are not likely to have, experiences similar to those we are blessed to watch our children have.
“I have to mention the MDA summer camp!” Casey’s letter continues. “This will be Allie’s second year at camp and she can hardly wait. Allie has never had so much fun as she does at camp! And I can’t express how much joy it brings to me to see my little girl participating in activities adapted just for her, like horse back riding and riding a zip-line!”
There are no cures for the various muscular dystrophys. The goal of treatment is to control symptoms. Remaining as active as possible is very important. Leg braces and wheel chairs can help keep patients mobile. Steroids are sometimes prescribed to children to keep them walking as long as possible. Complete inactivity such as bed rest can make the disease worse.
The severity of disability depends on the type of muscular dystrophy. All types of muscular dystrophy slowly get worse, but how fast this happens varies widely. Some types of muscular dystrophy are deadly. Other types cause little disability and people with them have a normal life span, according to a National Institute of Health Web page.
MDA has a long history of working for what are often known as “Jerry’s kids.” Jerry Lewis has raised national awareness of MD though his Labor Day Telethon that began in 1966. Lewis has retired as the front person for the telethon but the need for research, for treatment, for counseling and for summer camp is as important as ever.
Ana Papoutsis is executive director of the MDA Southeast Texas District. She and her staff have been working on an event that will be held Thursday at Texas Roadhouse on U.S. 69 in Port Arthur, the 2011 Mid-County Telethon Executive Lock Up, a closed event where many volunteers from companies in Mid- and South County are contacting their friends and associates and asking for donations for MDA.
The donations don’t have to be large. $30 will fund a flu shot to protect one of the kids. Research is expensive, but every dollar helps fund another second of scientists looking for a cure. If 80 people donate $10 each they can send a youngster like Allie to camp.
I am honored to have been asked to participate in raising money for MDA to use for research and for camp. MDA has provided a Web page where people can go to donate. I will include the address at the end of this column, but I want to make it as easy as possible to donate. If you would rather call me than go to a web site, call (409) 721-2431 and I will take your donation over the phone.
I will also post this column on panews.com so people can have a link to the MDA donation page.
I hope Allie’s story touched your heart like it touched mine. Maybe you have family members like my cousin’s daughter, who he lost to MD shortly after her high school graduation. Or maybe you have friends, like the step daughter of my former room mate, who they lost when she was a young adult.
Money is needed for research to find a cure to stop the loss of these young people at what should be the prime of their lives. Money is needed for things like summer camp to keep the children active, to give them home and to give them smiles.
If I can play a part in helping raise that money by asking for it, then I’m asking everyone reading this to do what you can. Don’t underestimate the power of many small donations working together to make a large impact.
Allie’s mom, Casey, said it better than I can, “This organization and its staff are amazing! Keep raising money for MDA!!”
Don’t let this day go by without doing what you can. To donate, log on to https://www.joinmda.org/2011midcountytelu/rcowles.
Roger Cowles is editor of The Port Arthur News. Contact him a firstname.lastname@example.org.