Both parents work. But they can’t keep up with the cost of specialized care for their son

Sitting on the couch between his mother and father, 16-year-old Ethan Feaster is doubled over with his head in his hands, moaning and clearly in distress. He’s having another migraine.

“Sometimes it’s hard for him to communicate that his head hurts, that it is more than just a small headache,” his father, Chris Feaster, explains. “He becomes really upset.”

Ethan has severe autism, which has limited his ability to communicate and led to learning delays. He also experiences debilitating migraines and has had seizures since he was 16 months old.

Chris and his wife Diana struggle to care for their son. They both work long hours to make ends meet and recently had to switch their insurance to a managed care program through Medicaid.

Jeannie Demarzo , who works for the Danielle Demarzo Foundation, an organization devoted to supporting resources and activities for children with special needs, nominated Ethan for Wish Book.

“He’s just such a sweet, loving boy,” said Demarzo, “The whole family is wonderful.”

Chris and Diana married in 2001 while working for The Way International, a religious organization based in New Knoxville, Ohio. In 2005, they welcomed their first child, Jazmin.

Two years and four days later, Ethan was born. Doctors soon saw signs he wasn’t meeting developmental benchmarks.

“It was a shock at first, but the only thing we could do is move forward and make the best of it,” Chris said.

But young Ethan’s health problems didn’t end there. Just a few months later he suffered his first seizure.

“Ethan wasn’t feeling well,” said Chris. “I was home from work and Diana was in the bedroom trying to comfort him and all of the sudden, I heard her screaming.”

Diana remembers what it was like to witness Ethan’s sudden convulsions.

“His whole little body is shaking and he’s not responding,” she said. “I knew it was a seizure.”

He suffers both grand mal seizures like that one and absence seizures, which are characterized by rapid blinking or staring into space.

By the time he reached kindergarten he was in a fully special needs classroom.

In 2018, the Feasters moved to Hollywood, which brought new challenges for Ethan. One was that South Broward High didn’t have the appropriate infrastructure to manage Ethan’s conditions. Another was migraines so severe they sent him to the hospital for days.

“He’s usually there for two or three days,” Chris said, “getting a protocol of medications to break it. He’s been there for up to a week before. His last one was four days.”

Ethan is now enrolled at North Academy School in North Miami Beach, which is designed for children with special needs. Ethan requires an iPad with specialized reading and mathematics learning software that keeps him engaged.

A personal care assistant attends school and stays with him every day. Due to insurance changes, the family is paying close to $600 per week out of pocket.

Diana explained how important the assistant is to Ethan’s care.

“The assistant will come and get him and take him to school, stay with him all day and if I work, she stays with him until Chris gets home,” said Diana, “Without her, I couldn’t work full-time.”

Seated next to her, Chris chimes in, “And these days we need two full-time incomes.”

Along with the increased financial burden of Ethan’s care, the Feasters also deal with the significant stress of Ethan’s medical issues.

“A medical professional told me that the stress level of a parent who has a child with needs like [Ethan’s] is on par with a soldier in battle,” said Chris. “That’s the kind of stress it puts on the three of us.”

The third person in that equation is Jazmin, who at 18 is a significant contributor to her younger brother’s care.

A senior at Sheridan Hills Christian School, Jazmin has received several college acceptance letters, but she hasn’t decided which school to attend yet. She doesn’t want to move too far away.

“I’ve always known since I was young, no one’s ever had to tell me that one day I would have to take care of Ethan, ” she said. “I don’t want him to not know where I am.”

The whole family participates in Challenger Baseball, a league for children with special needs. Ethan plays, Chris is a coach, Diana an assistant coach, and Jazmin is a “buddy” who assists the kids on the field.

From Wish Book, the family would like help with Ethan’s education and his personal care assistant. That assistance will help them get involved in more events like Challenger Baseball that can give Ethan moments of growth, like when he learned how to hit the ball without a tee.

“He just saw his friends not using the tee and he decided he wasn’t going to either,” Chris said, cracking a wide smile. “So he worked at it and finally did it.”

How to Help

To help the more than 180 other nominees who are in need this year:

▪ To donate, use the coupon found in the newspaper or pay securely online through www.MiamiHerald.com/wishbook

▪ For more information, call 305-376-2906 or email Wishbook@MiamiHerald.com

▪ The most requested items are often laptops and tablets for school, furniture, and accessible vans

▪ Read all Wish Book stories on www.MiamiHerald.com/wishbook

This story is a result of a partnership between the Miami Herald and the Lee Caplin School of Journalism & Media at Florida International University