FORT MILL, SC (WBTV) - If you follow our #MollysKids, you might remember the recent post of 19-year-old Hannah Guardado and her diagnosis of POTS. It's supposedly rare.
I say "supposedly" because since writing about Hannah, I've had multiple parents reach out about their child living with the same thing. Zach Casillo of Fort Mill is just one of them.
13-year-old Zach was diagnosed with POTS last year. In a very watered-down definition, POTS is intolerance your body sustains upon standing. (More formal definition here >> http://www.dysautonomiainternational.org/page.php?ID=30)
"POTS is only our most recent obstacle," mom Billie Casillo says. "Zach was born with something called Transposition of the Great Arteries, or TGA. It's a serious and rare heart defect where two of the main arteries leaving the heart are reversed. He was also diagnosed with other conditions and all of them combine to leave him at increased risk of heart disease, stroke and diabetes. They've also left him with immune deficiency, migraines and frequent trips to the hospital. Because he never knows exactly what will happen, he has been home-schooled the past several years."
Zach has had more than 14 surgical procedures, and stays hospitalized three-to-four times a year.
"But I don't want people to ever think his illnesses define him," Billie says. "I am a proud mother. Zach is happy and battling well. I am his biggest fan."
Billie says their next step is to try to treat the POTS so it doesn't cause critical permanent damage. Recently, they got news they have an appointment at the Mayo Clinic in Minnesota.
"We're thrilled," Billie said. "We leave April 25 and will be there at least two weeks to see seven-to-nine specialists for his various conditions. If it goes well, we can come home and follow up here. It's one of the few places in the country that has an autonomic doctor who can assist with Zach."
Because doctors and appointments come at a price, Billie had to quit work, sell their home and move into an apartment to find a way to make ends meet to cover the medical bills. Billie says her son is more important than the exorbitant costs.
"We would do it all again without hesitation to see Zach continue to enjoy life. Whatever it takes," Billie says.
Zach commented in a more quiet teenage-boy way.
"I couldn't get through without the support," he said. "It's a long journey."