Keeping Faith — How the Chinnock Family Copes with Rare Disease

Field 18 was a couple hundred feet away, a couple hundred feet too far for her crutch to take her.

So instead, East parent Audrey Chinnock rolled up and hobbled her way onto the 3&2 baseball bleachers to watch her son play. 

One glance at the wheelchair made Caroline, her family friend, blurt her confusion with seven-year-old bluntness — she didn’t like that Audrey was still “hurt,” she didn’t like the way she couldn’t walk around the park with her and she really didn’t like that she would never fully recover. 

Chinnock responded with a smile and a “you have to look on the bright side of this bummer.”

And together, while the umpire and other fans were probably staring, Chinnock and Caroline sang a song from chapel over, and over and over.

“Stay on the sunny side, always on the sunny side, stay on the sunny side of life.” 

Positivity and humor shine through her life every day — whether that be singing a kids’ song at a baseball game or calling the doctor who took her blood at 3 a.m. “Count Dracula.” But with the diagnosis of Neuromyelitis Optica, her past two years have been filled with constant readjustment to a life where some days she can walk around with a crutch and some days she can’t get out of her bed.

The incurable disease that leaves most blind or in a wheelchair within five years has impaired her, but also challenged her three kids and husband — pushing and strengthening their faith. 

Chinnock went to church and a bible study every week, but it wasn’t until after she was rushed to the hospital with trouble breathing and loss of feeling in her legs that she and her family realized the importance of relying on something higher than themselves. 

She got her blood drawn and spinal taps done in the months of waiting to find results. Her daughter, junior Ava Chinnock, said that they didn’t think much of it during the waiting period because they assumed it wouldn’t be the bad one — the one the doctors seemed to talk in hushed voices about. 

But she was diagnosed with NMO. 

“I think [when we found out] we just really had to rely on the Lord because we knew nothing about it at the time,” junior Ava Chinnock said. “I mean we’d done some research but it’s all just terrible things that happen to people. That was a really hard time for us.”

The diagnosis process that lasted from November of 2017 to February of 2018 required her to stay in the neurology ICU unit of KU Med for seven days. 

A few nurses who visited — three daytime, two nighttime and a cleaning lady — all opened up to Chinnock about their life stories. One put herself through school after her husband passed away, while another started a non-profit organization to help sick kids after losing one of her own. She knew God gave her these people and their stories to remind her of hope.

“I don’t even know if I had ‘counselor’ on my door, but I felt like people were just opening up to me,” Chinnock said. “I just had these remarkable people caring for me and so somehow I just felt like God put these people in my life in those seven days that were so much of a story of hope, I mean really of resilience.” 

Before she was rushed to the ER, the family calendar was constantly marked up — she was always busy, and always organized. Now, her schedule runs according to how she feels each day, causing friends and especially family to adjust and step in to help with anything from the physical acts of driving her to infusion appointments to the emotional ones of calling to check up. 

Every once in a while, Ava will see the lights on and her mom snoring in her bed at 8 p.m. because of the exhaustion her disease brings. She then goes into the kitchen to grab a glass of water and the orange bottle — she knows her mom’s meds need to be taken at night. With a dad who’s an ER doctor, an older sister who’s four hours away at college and a younger brother, Ava sometimes needs to step into a caretaker role. 

The Chinnock kids are always willing to help out, and they always have been, according to family friend Molly McClellend. And as much as their mom tries to keep them out of the tough stuff, their lives have been changed. 

When asked to go to the movies, Ava tells her friends she’s visiting her mom at the hospital and she’s had to ask teachers for extensions on assignments when she can’t manage it all in one night. The balance of high school and coping with her mom being sick has been draining, but she’s looked to her mom’s positivity and faith for inspiration. 

“I’ve prayed a lot and I’ve tried to have faith, but at the same time it’s so so hard when you’re going through all of this,” Ava said. “I feel like what’s made my faith really strong is my mom’s faith being so strong because it’s urged me to grow.”

According to Ava, her mom has an eye out for God’s grace in everything she does, especially in relation to her disease.

Most days when Chinnock wakes up in the morning her legs feel stiff and her torso burns while her nerves wake up. But on the days that she manages, she makes her way over to a chair in the dining room and picks up her beat-up blue bible. 

“Audrey wakes up everyday with the courage to meet it head on and with the mindset that she’s not gonna let it take her down,” friend Susan Langford said. “She’s not letting anything stop her from trying to live life as normally as she always has and there are definitely good days and bad days, but I feel like she’s handled [this diagnosis] with so much courage and grace to hope that today is a good day and she can be the Audrey she’s always been.”

She’s not going to stop spending mornings in prayer. Her humor will always be there, even at the toughest doctors visits. And she will continue to wheel up to the front row at Cole’s baseball games — humming “Stay on the Sunny Side.”