amanda's story

by Dave Harney

There are challenges in life, and there are CHALLENGES. Although she probably wouldn’t agree, 10 year old Amanda Merlau from Hilton faces the latter every day. This is because she was born with Spina Bifida, a defect developed during the first month of pregnancy where the spinal column doesn’t close completely. Symptoms of the disease include full or partial paralysis, neurologic complications, orthopedic problems, and many other issues. An estimated 70,000 people in the United States are currently living with Spina Bifida, the most common permanently disabling birth defect.

But for Amanda, a 4th grader at Village Elementary School in Hilton, all this means little. She’s a regular kid, but she’s a fighter who battles hard every day to maintain her quality of life. She’s driven by a simple goal; to always walk without crutches or a wheelchair. This is not an easy goal, and Amanda knew it would mean very hard work. Fortunately, the goal was aided a few years ago by a chance meeting between Amanda’s mom, Sarah, and Bob Bovee, president of PHA Fitness Center. Sarah told Bob about Amanda’s situation, and he felt his staff could really help. This turned out to be an understatement. Twice a week Amanda heads to PHA to work with trainers Phil Antinarella and Kevin Silverman. The minute she walks in the door she is not allowed to use her crutches. They work on all her muscles, from head to toe. She lifts weights, does core exercises, and walks unaided, sometimes almost 1 mile per session! Not bad for a child who doctors said would always be confined to a wheelchair.

This isn’t the only workout Amanda does. She’s become quite an athlete. She recently went to the National Junior Disabilities Championships (NJDC) as a member of the Easter Seals’ Rochester Rookies, a group of about a dozen kids with physical disabilities who meet on Saturdays to train for competitive events. At the NJDC, Amanda won gold medals in shotput javelin, softball throw, and discus. And she broke national records set in 1985 in all but shotput! That’s not all. Aside from winning gold medals, she participates in phys ed at school, where she plays regular sports with the help of an Assisted Physical Education teacher. And she’s in Physical Therapy two other days during the week. So 5 days out of 7 Amanda’s doing something to work muscles that would otherwise atrophy and leave her wheelchairbound, as doctors had predicted. That’s determination!

Sarah, Amanda’s mother, is a single mom. She’s a trooper too, and it’s obvious where Amanda gets her determination and love of life. Sarah pushes her daughter hard, but it’s Amanda’s internal drive and motivation that are the keys to her success. And she needs to turn to those keys every day, because life, just as it does for the rest of us, doesn’t get any easier. For those with challenges like Amanda’s, or for any of us, finding the motivation to meet challenges successfully is what often provides the most meaning to life. Just ask Amanda.

Finally, thanks to new medical treatments and technology, nowadays most people born with Spina Bifida can expect to live a normal life. They can have careers, get married, and have children just like people who don’t have Spina Bifida. People with Spina Bifida have many special challenges because of their birth defect, but their condition does not define who they are.

ROCHESTER RESOURCE: PHA Health, Wellness & Fitness Center at (585) 232-8888.

The Rochester Rookies, a team of physically disabled children, is coached by Gregg Chalmers and Paralympian JoAnn Armstrong. Contact them through the Easter Seals at (585) 292-5831.