When you live in extreme rural Alabama, it can be difficult to find a true sense of community.
But that’s exactly what Tony and Rhonda Pierce – who live in unincorporated Lawley in Chilton County – found at the CRS office in Selma.
The couple’s granddaughter, Madelynn, has Warburg micro syndrome, a rare autosomal syndrome with characteristics of microcephaly, microphthalmia, optic atrophy, and significant developmental delay.
Tony came to the CRS office armed with questions about his granddaughter’s condition. He left with answers, advice, and a strong and supportive network of professionals to help Madelynn succeed.
After initial genetics counseling at Children’s of Alabama, Madelynn received services through Alabama’s Early Intervention System and attended orthopedic; seating, positioning, and mobility; and feeding clinics with CRS.
“The first time I went to a clinic, I felt like I was at home,” said Tony. “You don’t realize how different it is until you have child with a disability. CRS has given me so many helpful ideas on several things I would have never even thought of, like putting different food textures on the bottom of the spoon.”
Helpful tips on little things – such as teaching Madelynn vowel sounds – might seem insignificant, but little things often yield a big result.
“Early Intervention has really taught me the benefits of play,” Rhonda said. “We’re trying to learn vowel sounds right now. A-E-I-O-U. Just any way to communicate. We’re trying to learn her language, whether that’s hand signals or watching her facial expressions. We used to watch TV at night, but now we’d rather sit, watch, play, and enjoy our time with Madelynn.”
Early Intervention and CRS have joined the Pierces in celebrating many of Madelynn’s little victories, like being able to sit upright for several minutes.
Tony said CRS is currently working with Madelynn to help her stand. With enough push – and devices like AFO leg braces – he feels she’ll soon be on her feet.
“One of the best things about CRS to me is they are always looking ahead to the next step,” Tony said. “CRS keeps us on our toes and our wheels in motion.”
One of the most-recent steps was installing a pool. When Madelynn unexpectedly took to the water on a recent beach trip, Tony consulted with CRS staff on the benefits of water therapy for her. They agreed it would help.
“She’s come out of her shell in the last eight months,” said Tony. “CRS is there for us 110 percent, not just for today or tomorrow, but months and years from now. I wouldn’t know the first thing about therapy without them. With CRS on my side, I know she can accomplish a lot more.”
With Madelynn completing her care through Early Intervention, the next big step for her is enrolling in the public school system. It’s a step that Tony and Rhonda feel Madelynn is now ready to take.
“Madelynn means the world to me,” Tony said. “She gives me a reason to get up in the morning. I want to see her be able to have the things other children have and do the things other children do.”
With the Pierces and ADRS backing and supporting Madelynn, success is sure to follow.
This story is part of an occasional series – entitled Success17 – highlighting the accomplishments of ADRS consumers. It and subsequent stories in the series will appear in the 2017 ADRS Annual Report.