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meet mady

Mady Smiling with sisterMady and her family
Laughing MadyClapping Mady

"The model of how she was supposed to do things was her peers."

Madison “Mady Yanik can light up a room with her smile, as it stretches across her face from ear to ear like a bridge connecting two landmasses. And, according to her mother Tara, Mady represents this image in so many ways, bringing together parts of life otherwise untouchable.

Mady was born on January 5, 2007 as the first child of Tara and David Yanik. At 20 weeks pregnant, the new parents were told that their child was functioning with only one kidney. The Yaniks knew that even with a single kidney, their child could still live a healthy, normal life. However, once Mady was born, the health problems quickly began adding up. Within the first three months of her life, doctors noticed complications with Mady’s thyroid, kidney and heart, including a heart murmur. After a visit with the cardiologist, it was clear that Mady had supravalvular aortic stenosis (SVAS), which is a narrowing of the aorta, the large blood vessel that carries blood from the heart to the rest of the body.

Gradually, doctors started piecing things together – Mady’s distinct facial features, feeding problems and health issues. After conducting a “FISH test (fluorescence in situ hybridization), which is a technique used to identify the presence of specific chromosomes, doctors confirmed that Mady’s chromosome 7 was missing genetic material. Maddy was diagnosed with Williams syndrome, which is a rare genetic disorder that affects a child’s growth, physical appearance and cognitive development. It is characterized by medical problems, including cardiovascular disease, developmental delays and learning disabilities, as well as highly social personalities, an affinity for music and strong verbal skills.

“It was all pretty horrible, remembered Tara, trying to stifle the tears. “She’s such an amazing little girl, but the instant you’re diagnosed with something like that [Williams syndrome], you automatically think, ‘Oh, she’s never going to get married. She’ll never be able to live alone. She’ll never be able to do everything that everyone else is doing.’ These are the things everyone dreams that your child will be able to do. 

So the Yaniks did what any parents would do next given the recent diagnosis: they sought out the best care for their child. Mady began receiving home visits through Tennessee’s Early Intervention System (TEIS) when she was four months old. According to Tara, during the first year, Mady wasn’t responsive to anything and didn’t interact with others or play with toys. As is common for children with Williams syndrome, Mady’s poor muscle tone made feeding very difficult, and her gag reflex made swallowing even applesauce seem impossible. While early interventionists worked with Mady on developing these skills, the Yaniks also went to Erlanger Health System twice a week for physical and feeding therapies.

Mady started attending Siskin Early Learning Center-East Brainerd when she was 1 ½ years old. Within the first year at the center, Tara saw major improvements in her daughter’s development. What may have seemed like baby steps for some parents were giant leaps for Mady and the Yanik family. Tara remembers that almost immediately, Mady became more mobile and made efforts to speak. Not long ago Mady was not playing with toys or interacting with others at all, but she quickly began developing social skills from being around children her own age. For example, she, just like everyone else, sat around the table with her peers when it was time to eat. Right away, her feeding habits improved.

“It was pretty amazing watching this, Tara said. “That was when we knew we were keeping her here as long as we could, and all of our kids.

“I don’t know when she would have learned these things had she been at home all day, she added. “I really thought she should be at home with me because I’m a stay-at-home mom, but then I realized that kids really need to be with kids their own age to learn. The model of how she was supposed to do things was her peers.

Today, in a class with 14 of her peers, Mady is the life of the party, the class clown even, the child making everyone laugh.

Betsy Peters, Mady’s teacher at the center, said Mady is loved by everyone because of her infectious smile, sweet heart and gift for making people laugh.

Tara sees her daughter’s friendly, outgoing personality as being a mark of who she truly is. And for that reason alone, she is loved by many.