The family needed a miracle, and a group of Edwardsville volunteers stepped in to help.
The Robinson-Cionek family moved to Edwardsville in November 2014. Kaitlyn Robinson had grown up in Edwardsville and was living in Houston. When her mother became ill, she decided to return home. She and Jeremy Cionek found a home less than a mile from Columbus Elementary School, which was perfect for them and their children: Mackenzy Robinson, 9, and Cameron Cionek, 3.
But on Aug. 27, their lives changed.
Mackenzy was riding her bike home from school, and was nearly home when she crossed the street at a crosswalk and was struck by a car. The driver was speeding, Kaitlyn said, but the speedometer was broken, he told police. He didn’t have a cell phone but moments later a neighbor pulled over and called 911.
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Kaitlyn said she stepped out of her house and saw that something had happened less than a block away. “Neighbors were running at me hysterically,” she said. “And I just knew.”
She ran toward the scene, but by the time she got to the intersection of Highland and East Union, paramedics were already there.
“They were going to have a helicopter land right there, but they couldn’t get an estimated time of arrival,” she said. So instead, an ambulance took Mackenzy to Anderson Hospital.
By then, Mackenzy was nonresponsive and unable to breathe. A helicopter carried her to Children’s Hospital in St. Louis.
By the time she got to Children’s, Mackenzy’s brain was basically shut down. “The only thing working was the brain stem,” she said. “They gave me a 3 percent chance for her to make it through the night.”
There were blood transfusions and intubations, doctors and nurses coming and going — and a terrible choice to make. Mackenzy’s brain was swelling, and the intracranial pressure could cause permanent brain damage. But the solution was a risky surgery in which a portion of the skull would be opened to alleviate the pressure. Mackenzy’s lungs had sustained damage in the accident, and it was possible she could not survive the anesthesia.
“We had to choose whether to risk breathing problems during the surgery, or hold off and risk further brain damage,” Kaitlyn said.
In the end, they opted to wait. A monitor tracked the swelling and pressure inside Mackenzy’s head, trying to give her lungs time to recover. But soon, the pressure was much too high, and they decided to risk the surgery. They operated the day after the accident, and then had to wait and see.
“Within a week, her EEG showed brain activity,” Kaitlyn said. “But we didn’t know if she could wake up, or who she would be when she woke up.”
We didn’t know if she could wake up, or who she would be when she woke up.
Kaitlyn Robinson, of Edwardsville
Meanwhile, the family was in trouble. Jeremy had lost his job and was filling out applications for nearly 500 jobs. Kaitlyn had just left one job to start a new position as a secretary — but Mackenzy’s accident happened three days beforehand. The landlord was patient about the rent, Kaitlyn said, but there was a broken water pipe resulting in a $600 water bill.
And Kaitlyn’s mother had been diagnosed with liver cancer, so Kaitlyn was splitting her time between caring for Mackenzy at Children’s Hospital and trying to get her mother at St. Louis University Hospital on a transplant list.
That’s when someone called Edwardsville Neighbors in Need.
Families in crisis
Edwardsville Neighbors in Need was inspired in 2009, when Chad Opel’s stepfather suffered a spinal stroke. He was paralyzed from the chest down, and the family was hit with a lot of expenses that insurance doesn’t cover, like remodeling the house to be handicapped accessible and altering the car to make it possible for him to drive.
“Most of us don’t have savings in place to deal with an unexpected illness or crisis in your family,” said Kathie Opel, Chad’s wife and now president of Neighbors in Need.
The Opel family organized a fundraiser called Taste of Edwardsville, featuring local restaurants. It was a huge hit, and the Opels were struck by the response from the Edwardsville community.
“There was such an outpouring of generosity,” Kathie Opel said. “As soon as it was over, they were asking who we should help next year.”
In 2010, Kathie and Chad Opel formed Edwardsville Neighbors in Need. It’s a nonprofit 501(c)3 charity that provides assistance for families facing medical crises and other hardships who live within the Edwardsville school district, which also includes Glen Carbon, Hamel, Worden and Moro.
They raise money through the Taste of Edwardsville, a Thanksgiving “Turkey Trot” 5K, and private donations — sometimes raised at events like a recent block party in Ebbets Field subdivision.
This year’s Taste of Edwardsville raised more than $50,000 after expenses. “This year we sold out all the tickets in 23 hours,” Opel said. “It’s become a fun tradition for people to look forward to every year.”
This year’s Turkey Trot had to be moved to a larger location, and broke all its previous records with 772 runners and $13,000 raised — an increase of 200 runners and $9,000 since 2011.
In fact, Edwardsville Neighbors in Need has given nearly $250,000 to families in the community since its inception in 2010. According to its tax filings, it has no employees and no office other than a post office box.
Kathie Opel serves as president; Veronica Ambuehl, owner of Vine Floral Design, is vice president and Chad Opel is the treasurer. They and the six other board members serve without compensation, and at least two board members meet with each family they help. They don’t give out cash, but pay for services and assistance directly.
In the last five years, they have helped more than 60 families get through a medical crisis.
“As a family, you’re facing (medical crisis) and seeing how it changes your life in an instant, when you can’t work or you need to be at the hospital all the time and may not have support from your employer,” Ambuehl said.
Sometimes families need help with a medical bill or a copay; other times it’s the things medical insurance doesn’t touch, like retrofitting a car for hand controls or renovating a house to be wheelchair-accessible, paying travel costs and housing for a family member to accompany the patient, or just some help making the bills while the family is in crisis. Sometimes it’s as simple as a gas card to help cover the costs of so many drives back and forth to the hospitals.
To contact Neighbors in Need for assistance, or to donate money or services, go to http://edwardsvilleneighborsinneed.org.
“Even if you’re on top of your life financially, a crisis can hit you out of nowhere and wipe you out in an instant,” Ambuel said. “Edwardsville is a very fortunate area, but no matter what the level of affluence, there are always people who need help.”
For example, one of their clients was 2-year-old Maggie, diagnosed with stage 4 neuroblastoma in the spring of 2011. Her mother, Tara, whose last name was not released, was pregnant with her second child and gave birth to little Nora six weeks prematurely, while Maggie underwent brain surgery.
Nora spent some time in neonatal intensive care, and eventually came home. But Tara, who worked at a local restaurant, was also caring for Maggie, who faced 18 months of high-dose chemotherapy and a stem-cell transplant. Edwardsville Neighbors in Need gave her financial assistance so Tara could stay home to care for her children rather than returning immediately to work after her maternity leave.
Now they’re doing beautifully, Opel said. “Maggie’s in school now and thriving,” she said.
Opel said there is a huge portion of the population that doesn’t generally qualify for help from established programs aimed at low-income families, but does not have the financial resources to weather a storm like these families have faced. She calls it a “bridge,” a way to help them get through the tough times.
That’s how Mackenzy’s story came to their attention.
‘Best Christmas ever’
Edwardsville Neighbors in Need met with Kaitlyn Robinson and covered two months’ rent and the delinquent water bill. They provided gas cards to help Kaitlyn with her drives back and forth across the river to the hospitals, and checked in with them regularly to see what kind of help they might need.
It was a difficult time for Kaitlyn, trying to care for her daughter and her mother. But then her “miracle” happened.
“I was sitting in the waiting room and one of the doctors called to me. I asked him what happened, and he said, ‘You have to come see it!’” Kaitlyn said.
She went into Mackenzy’s hospital room, and her little girl opened her eyes and smiled at her — even tried to hug her.
“It was like she was reborn all over again,” Kaitlyn said. “It was just incredible.”
Even if you’re on top of your life financially, a crisis can hit you out of nowhere and wipe you out in an instant.
Veronica Ambuehl, Neighbors in Need
After the holiday break, Mackenzy will return to school full-time. She will be working with tutors from Southern Illinois University Edwardsville who volunteer for homework help at the Edwardsville Public Library, and the doctors have told Kaitlyn they think Mackenzy will make a full recovery within two years.
But Neighbors in Need wasn’t done. As part of the treatment she received, Mackenzy’s hair was shaved off. As such, people sometimes mistake her for a boy, Kaitlyn said. “It’s been hard on her self-esteem,” she said.
So Neighbors in Need got Mackenzy a year’s worth of haircuts, child jewelry and pink “girly” things, she said, to help her feel beautiful. They arranged four tickets to the Polar Express celebration at Union Station in St. Louis: a showing of the holiday film, as well as an elegant dinner before they boarded an actual train and drank hot chocolate as the conductor read the classic children’s story to them.
“Mackenzy got to dance with Santa and elves and not worry about recovery or being different,” Kaitlyn said. “She got to be a kid for a day. … It really helped us have one of the best Christmases ever.”
Here are some other ways Neighbors in Need has helped area families:
• The group provided an iPad for a 10-year-old girl with cerebral palsy, who uses it to function more easily in the classroom and communicate with students and teachers.
• A couple with three children took in a niece and three nephews due to a family emergency. Neighbors in Need provided baby gear, bunk beds, dressers and bedding so each child could have sufficient sleeping space.
• A 38-year-old radio engineer began feeling ill in early 2014 and was originally diagnosed with pneumonia. It turned out to be H1N1, and after six months in intensive care at Barnes-Jewish Hospital, he had to have a double lung transplant. He then went through months of pulmonary and physical therapy five days a week, four to five hours a day. Neighbors in Need helped pay some pressing bills for his family, including the remaining balance on his car loan.
• An Edwardsville High School student needed a 12-hour surgery with 10 weeks of recovery that could only be performed in Minnesota. Neighbors in Need helped the family pay for travel, short-term housing and medical copays.