GIRARD, Ohio (WKBN) – Tuberous sclerosis affects one in 6,000 people. One of them is a young boy in Girard whose medication can cost up to $15,000 a month.
Even with insurance, his family almost couldn’t afford it a few weeks ago.
“No medicine should cost more than a car every month,” Jaime Nitzsky said.
Her 7-year-old son, Cayden Perry, deals with his tuberous sclerosis diagnosis every day. It causes epilepsy, tumors, autism and kidney disease.
“It’s rewarding but at the same time, it’s the most difficult, isolating thing ever,” Nitzsky said on being a parent to a child with special needs.
She is on a constant schedule of medicines and checking blood pressure. She works from home to care for Cayden.
But she wouldn’t change him.
“He’s just happy, you know? And that makes dealing with everything else a lot easier because he is so happy,” Nitzsky said.
A few weeks ago, there was a medical billing mistake with her pharmacy, CVS. The pharmacy said Cayden’s epilepsy medication would be withheld.
“It’s a difference between hundreds of seizures daily and maybe none,” Nitzsky said.
She needed to pay $5,000 for a Medicaid authorization from 2015 — thousands of dollars she had been already paid out over the previous year.
It left Cayden with only three days left of his medication.
“You’re thinking, ‘What’s going to happen now?'”
It was a concern for the whole family.
“I was scared and terrified for his life because I knew that if he didn’t get his medicine, he would have seizures,” said Cayden’s sister, Brynna.
Nitzsky got an emergency dose and one month to figure out what to do. Her first thought was social media.
“Like, ‘Hey, this is going on. I have no idea what to do,'” she said.
CVS saw her Facebook post and reached out. Nitzsky worked with two employees and because of them, the glitch is fixed.
“Five thousand dollars, basically just sitting on my shoulders. It was gone,” she said.
Even though what they call “Cayden’s Cocktail” will always be a part of his life, his mom is proud.
“It is super rewarding to just watch him kind of defy the odds,” she said.
Jaime is a medical billing specialist, so she knew something was wrong from the beginning. She hopes no other special needs families ever have to worry about their child’s medication.