Five-month-old Ethan Nevins is battling a rare lifelong disorder. His struggles have inspired a Mid-Missouri school to help.
After Eugene resident JoAnne Nevins delivered Ethan in June, nurses noticed his breathing was shallow. He was quickly transferred to Women’s and Children’s Hospital in Columbia and a diagnosis of Congenital Central Hypoventilation Syndrome was made.
The syndrome affects the central and autonomic nervous system, which control many of the automatic functions of the body, including heart rate, temperature, sensing oxygen levels in the blood and more, according to the CCHS network website. There are about 1,000 cases of the syndrome worldwide.
Ethan now has a gastrostomy tube, ventilator and tracheostomy tube, JoAnne said. He is still under the hospital’s care.
When teachers and parents at Cole R-5 learned of Ethan’s condition, they brought the idea of helping the family to staff. The school is where Ethan’s big brother, Reed, attends kindergarten.
The idea caught wind, and the staff and students organized “Easing Ethan’s Journey” fundraisers to support the Nevins family. The school will complete its last day of the fundraiser today.
As part of the fundraising, the student council collected $2-3 donations for students to wear hats and $5 for teachers, faculty and staff to wear jeans. Junior high and high school students also sold snacks. On Monday, the school raised $2,467, Superintendent Dawna Burrow said.
“Our student council was made aware of a need, and like the great young adults they are, they developed a plan,” Burrow said. “Our students and staff are always willing and very generous when there is a need in our school. We are very proud of our students.”
Although Reed was out sick Monday, he is wearing a CCHS t-shirt today, JoAnne said.
Reed is shy but is excited the school is showing its support, she said.
“He doesn’t say a whole lot,” JoAnne said. “He likes going up to see his brother a lot. He doesn’t really ask questions. I think he’s excited for the fundraiser, but he’s also shy, he doesn’t like all the attention on him.”
Her husband, Patrick, 3-year-old Gavin and the entire family want Ethan to come home. However, he won’t be able to come home until the family can secure 24-hour home nurse care, which could take up to one year, she said.
“I don’t think it helps with the area,” JoAnne said. “Even patients in Columbia, it takes a while to get the nursing set up. With us being in a smaller area, there’s just not a lot of home nursing out there.”
Working part-time and doing “daily mom duties,” keeps JoAnne from being with Ethan 24/7, which is hard, she said.
“I try not to think about it too much because I get emotional, and it’s not worth it,” JoAnne said. “There’s nothing else we can do. I put on a happy face a lot.”
“The hardest part is trying to manage time in Columbia and at home, as well with the other kids, and doing my daily mom duties,” she said.
The family has accrued more than $1 million in medical bills. After insurance, they are left with about $6,000, she said.
“That’s pretty much what we’ll have to pay yearly from what we understand because of all the care he’ll need,” JoAnne said.
In the near future, the family will need to travel to Chicago to see a CCHS doctor, she said.
Community members who wish to donate can make checks out to Nevins Family Trust at First Missouri Credit Union, 4102 First Missouri Cu Drive, St. Louis, MO, 63129.