Thursday, May 13, 2010
A quarter century of miracles
Children’s Miracle Network is celebrating its 25th year supporting kids and their families in the Ozarks.
Heather Zoromski says that when you’re sitting in her position, it’s easy to see miracles all around.
In her time as executive director of Children’s Miracle Network, she’s consoled parents who have just had a child diagnosed with diabetes or cancer; she’s helped them face the emotional and financial obstacles that can come with a diagnosis. And she’s there when kids make it through, too. She remembers when Danielle Roeder, who hadn’t been able to walk or speak was diagnosed and treated at the Mayo Clinic.
“She went for last-ditch tests and they found out what was wrong,” Zoromski says. “Now she’s running and playing. It’s incredible.
“We get to see that every day. I wish people could see what I see. When you meet the families that come in, it’s amazing.”
This year, Children’s Miracle Network is celebrating a quarter century of caring for children in the Ozarks. On June 5 and 6, Cox will host the 25th annual telethon on KYTV, an event that will reunite many of the people who have been involved with CMN since day one.
“We’re going to have families from the early telethon years come back in and tell their stories,” Zoromski says. “Children who were kids in the ’80s and ’90s are grown up and have kids of their own.”
Since CoxHealth became a CMN hospital in the mid 1980s, the organization has raised more than $22 million, all of which has gone to help children and their families here in the Ozarks. Currently, they assist more than 100,000 kids annually.
CMN was originally founded in 1983 and organizers soon decided to expand the charity by partnering with local hospitals. Here in Springfield, Cox was becoming known for its children’s care: Cox South – originally planned as a women’s and children’s hospital – had just been completed. When CMN approached Cox CEO Neil Wortley about becoming an affiliate, Zoromski says it was an easy choice.
Since then, Children’s Miracle Network has funded everything from family care grants and equipment in the NICU to CoxHealth’s Child Life Program and the CARE Mobile.
“Hundreds of thousands of families have been affected and many may not know it,” Zoromski says. Plenty of patients have benefited from equipment or educational programs or even the little extras, such as meal trays brought to the hospital room. Zoromski says touching so many lives is possible because of CMN’s special relationship with CoxHealth.
“A lot of CMNs aren’t set up like us; they have to pay for their administrative budget out of what they raise,” she says. “Many only give money right back into the hospital in equipment and they don’t get to see firsthand where the money goes.”
CoxHealth covers all of the salaries and administrative costs for Children’s Miracle Network locally, so all donations can go directly toward helping children and their families.
“Cox is wonderful to allow us to be so hands-on with our funding,” Zoromski says. “We have a lot of control and we can help families directly. Mr. Bezanson refers to it as the community’s charity, not Cox’s charity, and that’s the way we see it.”
“I meet people who have no idea what we do, or who think we send all of the money to national,” she says. “We’re all local and everything goes to the kids. And we don’t just help kids with certain conditions; you don’t even have to be a Cox kid. We’re here to help all the kids in Springfield and the surrounding areas.”
Below are the stories of three “Miracle Kids” who will be returning to the telethon this year, each of whom have had their lives changed by Children’s Miracle Network.
Chris Plate
Chris Plate says it’s hard to calculate the amount of time he’s spent in the hospital over the last 13 years. He’s now 17 and about to head into his senior year at Kickapoo, but he’s been fighting an ongoing illness since before he started school.
At age 4, he was rushed to Columbia, Mo., with kidney failure. After he was stabilized, he was diagnosed with a kidney disease known as Minimal Change Nephrotic Syndrome. This turned into Focal Segmental Glomerulosclerosis, a disease that attacks the kidney’s filtering system and causes serious scarring.
Growing up, he underwent a series of IV treatments, receiving a variety of chemotherapy and other drugs to treat his symptoms.
“I was in the hospital so much, getting treatment every day or every other day,” he says. “The staff always provided things for me to do to distract me while I was getting my IVs and I really appreciate that.
“Because of CMN, it wasn’t as scary for me. I didn’t worry as much like my parents did,” Chris says. “I enjoyed going to the hospital. I got to play games and hang out with the nurses and have a lot of fun.”
Chris appreciated the care so much that, as a 6-year-old, he started making Christmas ornaments – Santas made with clothespins, angels crafted from plastic spoons – that he sold to benefit CMN.
“I sold them for 2 or 3 dollars apiece,” he says. “The first year, we raised $200 and over the next few years we eventually made $1,000 a year to donate to them.”
By sixth grade, his disease was in partial remission and, for the first time, he had a chance to play sports. He loved football, but he had always been told he’d never get to play.
“When I asked the doctor if I could play and he said ‘yes,’ that’s one of the best moments I can remember from middle school,” Chris says. “Granted, I wasn’t very good, I got knocked around a little bit at 5’2” and 80 pounds, but it was a great time. I also got to run track and it was the first time I’d been involved in competitive sports.”
At the end of his freshman year, though, he had a relapse and spent half of the summer in the hospital. Now, he’s back in remission and making big plans for after high school. When he graduates, he’ll head to MU to study biology and chemistry, then on to medical school.
Even with all of those goals on his plate, he still makes time for the telethon.
“When I get around everyone else, I’m always so humbled,” he says. “Compared to a lot of other families out there, I don’t have it so bad. They’re all great people and so nice. It’s rough, but they’re strong and they have what they need through CMN.
“It’s a great organization. They help newborns and kids with severe diseases, but any one who heads up to the seventh floor benefits from their work. They really work for every family.”
McKenzie Cranor
When McKenzie Cranor was 8 years old, she woke up one morning with a severe headache. Her mom gave her Tylenol and let her lay back down. A half hour later, she had a seizure and became unresponsive. Her parents rushed her to Cox South, where doctors determined she had an aneurysm and would require emergency brain surgery.
“They were pretty blunt with my parents,” McKenzie says. “They told them to pretty much say goodbye before the surgery once they realized what was going on.”
Doctors couldn’t be sure what they were dealing with and they feared that even if surgery was successful, McKenzie might suffer brain damage. McKenzie made it through the surgery and, amazingly, avoided any permanent damage. She was in the hospital for a week and during her stay, nine machines were required to help keep her alive. Eight of the nine devices had been purchased by CMN.
She was in the ICU from Tuesday until Friday night, when she was able to go to the seventh floor. She remembers well the care staff provided and the Nintendo that they let her play.
While the surgery was a success, doctors were unable to pinpoint the cause of the aneurysm. McKenzie had a series of follow-up MRIs and when she was 13, tests found an area where it could rupture again. With CMN’s help, she was able to travel to Kansas City for the Gamma Knife procedure, a non-invasive treatment that prevented a rupture.
In the years since, McKenzie has been doing well and she and her family have been heavily involved with CMN. Her mom served on the board and she’s been in every telethon since. In 1997, McKenzie was the Missouri champion and traveled to Washington, DC, and Orlando for the national telethon.
Over the years, she has met many children helped by CMN, but some of her fondest memories are of her friends in Springfield.
“In the local telethon, the most amazing child I remember is Ryan,” she says, remembering Ryan Capps, who passed away in 2006 at age 17 after years of struggling with kidney failure and complications of spina bifida.
“She was one of the first people I met involved with the telethon. I did a lot of CMN stuff with her and she was the most amazing person – always upbeat and outgoing. Even when she was in the hospital, she was determined to get downstairs to the telethon.”
McKenzie says being a parent herself now – her daughter, Hanna, is about to turn 5 – has given her an even deeper appreciation for the work CMN does.
“I couldn’t imagine what my parents went through,” she says. “One day I was healthy and the next day I was in the hospital and they were saying I wasn’t going to make it. I couldn’t imagine being one of those parents. All the parents involved with CMN say ‘you don’t expect it to be you until it is you.’”
Justin Bess
When Stan Bess worked for KY3 in the mid-1980s, his job included working on the first telethon. He never thought then that CMN would touch his own life.
That changed in December 1987 when his son, Justin, was born 10 weeks premature. He weighed 3 lbs., 14 oz. and began his life with six weeks in the NICU.
In the NICU, the equipment required for Justin to survive was largely funded by CMN.
“All of those machines, scaled down to work with infants, are quite expensive,” says his mom, Nan. “To afford that caliber of equipment, you almost have to have an organization like CMN in the mix.”
Soon after they took Justin home, they learned his breathing reflex wasn’t fully developed. He quit breathing, but Stan was able to revive him. After a stint in intensive care, he was able to go home again.
The experience made Stan and Nan devoted CMN supporters. At just 6 months old, Justin appeared in his first CMN telethon in 1988.
For Justin, now set to graduate from Missouri State, the telethon has always been a part of his life.
“We were in the NICU a couple of weeks ago and it’s crazy all the doctors who, 20-plus years down the road, know who I am,” he says. “They have a vested interest in every child and every family that goes through there.”
Growing up, Justin underwent extensive physical therapy to improve his mobility. He says he remembers how tough some of the therapy was, like the time he went across the skywalk on his stomach on a scooter and how it seemed like he’d never make it.
“You want to give up and quit, but the therapists and staff were there every day, making sure I did it,” he says. “There was no quitting. That’s still a part of the way I go through my life today.”
Stan says it’s clear Justin’s passion and drive was forged in his early childhood.
“Any child that goes through the NICU is born fighting,” he says.
Early in his life, doctors were cautious about what they thought Justin might eventually be capable of. Stan says he remembers a twinge of selfish disappointment when doctors told him Justin might not be one of the kids who runs across the football field. He may walk, but he might not run.
Justin, however, had other plans. He played basketball and football before settling into playing year-round baseball in high school.
“To have people say, ‘don’t plan on this happening,’ ups the ante to make it happen and throw it back in their faces,” he says with a laugh. “I’m happy that I’ve been able not to just participate but to excel.”
“Without the help of the staff and CMN, we wouldn’t be sitting here talking,” Justin says. “I know the things I’ve been able to participate in, they wouldn’t have been possible without CMN.”