Miracle siblings
Published: May 10, 2006
Kim and Elaine Gouker made a pledge to each other early in the life of their son, Joel, who doctors said would live only 18 to 24 months.
“Before we left the (doctor’s) parking lot, we resolved we were not going to accept what the doctor said,” Kim said. “From an early age, we never talked about things that you can’t do, but what you can do. I still try to focus on that.”
Joel was born with spinal muscular atrophy, a degenerative disease that weakens every muscle in the body. Doctors knew little about the disease when Joel was diagnosed at 10 months.
“You can’t even comprehend how awful that felt,” Elaine said of the prognosis. “But you say to yourself, ‘God gave me this child for a purpose, and I’m going to do the best that I can and leave it in God’s hands.’ ”
Doctors knew only a little more two years later when sister Anna was born with the same affliction.
Joel is now 22. Anna is 20.
To see them and talk to them is evidence that life is sometimes unfair.
They both live life mostly in wheelchairs. They lack the muscle strength to move most anything … anywhere. Their breathing is at times labored. They do almost nothing without assistance. They’ve been Elaine’s full-time job since Day 1.
But talk to Joel and Anna, and a normal world emerges from their restricted lives. They share the same hopes, fears and vitality as any other young adult looking forward to graduating from college and breaking away from the guarded care of parents.
Joel and Anna defy odds daily, and it’s the result of many feats.
Treatments for SMA have improved. Their hometown community of Byron has supported them unconditionally. And there’s the resiliency of the family.
A parental pledge almost 22 years ago in the parking lot of a doctor’s office carries on today with two lives that weren’t supposed to be here today, a supportive father and a mother who’s made her life her kids’ lives.
The Gouker siblings at times resemble a married couple in their playful banter and ribbing. But they are each other’s biggest boosters.
Anna: “We have our own little eye communication.”
Joel: “I can tell what she is thinking.”
The bond was early and deep.
“Even at a young age,” Kim said, “when Joel learned something, he would just turn and tell Anna. He’s always looking out for her. One of my favorite pictures is him standing up in a leg brace and Anna looking up at him.”
A trait about the siblings as obvious as their physical challenges is their can-do attitude instilled by their parents.
Going to college was as matter-of-fact for them as it was for any other high school student.
“We have high expectations of ourselves,” Anna said at their ranch home while selecting classes for next fall at Rock Valley College. An aide was at her side.
Both graduates from Byron schools, Joel and Anna are successful students at Rock Valley College. Joel looks forward to graduating with an associate’s degree in December. Anna looks to do the same in spring 2007. They are already searching for a four-year college that can accommodate them physically and challenge them academically.
When Joel and Anna aren’t in school, they occupy their time on the phone.
“They love to talk,” Elaine said.
Joel also surfs the Internet using a voice-activated computer. He’s a sports nut. A collection of baseball caps stands in a corner of his bedroom. His favorite team is the Atlanta Braves.
Anna’s hobbies, she said, are stealing Joel’s hats, watching movies. sleeping, reading and burning music onto CDs.
A degenerative disease
Spinal muscular atrophy affects about one in 6,000 ba-bies. The degenerative disease is defined by weak muscles throughout the body, particularly the large muscles in the shoulders, hips and back.
Joel is able to use his left thumb to operate a touch-sensitive box that steers his wheelchair. Anna also uses a motorized wheelchair. While she can maneuver it using her facial muscles, she prefers the aid of others as her wheelchair has been known to go awry.
People with SMA also have difficulty swallowing. And their respiratory muscles are weak, resulting in breathing and coughing problems and a tendency for developing pneumonia and other lung problems. Before he was 5, Joel had pneumonia 13 times.
The respiratory challenges require Joel and Anna to sleep in a Port-A-Lung, a more modern version of an iron lung. While their heads remain free, the rest of their bodies are enclosed in an air-tight chamber. The machine forces air in and out of their lungs.
Both also suffered from severely curved spines. That kept them in a crumpled state, restricting their lungs. At best, both could sit up for 15 minutes before becoming fatigued.
Greatly enhancing their quality of life was a risky surgery performed nearly three years ago to straighten their spines. In a 10-hour surgery — given to each three days apart — a steel rod was bolted to the spine by Dr. David Mann, a University of Wisconsin surgeon.
Now both can sit up in their wheelchairs for several hours at a time, long enough to attend a full day’s worth of classes at Rock Valley.
Growing up
Born and raised in a small town of nearly 3,000 people and three stoplights had its advantages. Before Joel and Anna entered public schools, many of their peers already knew them.
Robert Baker, a former Byron High English teacher and now dean of students, taught an English class to Anna.
“She attended when she could, and she always did very well,” he said. “As far as fitting in, the kids always responded very well. They had known her since the beginning. That was a positive. Everyone always accepted her.”
Elementary school wasn’t as easy.
“I hated recess,” Anna said. “There were more kids around me and in my face and asking lots of questions.”
For Joel, middle school age was a rude awakening about his physical limitations.
“He wanted to be in the three-on-three basketball tournament so bad,” Elaine said. “That phase was so tough for him. He wanted to do what everyone else was doing.”
Joel now channels his enthusiasm for sports into fantasy football and baseball. He immerses himself daily in online statistics. He’s also an avid reader of local government news stories, sometimes generated by Kim, who is the Byron city clerk and an Ogle County Board member. That’s one way he and Anna keep tabs on dad.
Elaine and Kim have been divorced for less than two years. Kim remains a part of his children’s lives, visiting to watch an episode of “24” with them or simply being a phone call away at all times.
Mom and friends
Joel and Anna rely on their mother for nearly every waking need, including bathing and feeding.
Elaine is still able to pick up Anna, who weighs 70 pounds, and lay her on her back or set her in a wheelchair. To pick up Joel, who weighs 105 pounds, Elaine uses a hydraulic lift, which is attached to the ceiling and hangs over his bed.
Elaine drives Joel and Anna to and from Rock Valley College. Driving her children to school has been a daily task since they were in elementary school.
“I’m here with Joel and Anna 99 percent of the time, and you can start to feel disconnected, but people are there for us,” she said. “Helpers come here and highlight things in books to help them with school.”
One such helper and family friend is Rachel Hermes, 24, of Dixon. She first met Joel and Anna 10 years ago at a Muscular Dystrophy Association summer camp. They bonded quickly.
“During summers when I was in high school, I was one of their helpers. Just doing whatever Elaine needed me to do. Today, I was over there, and Joel and I were working on a college English paper together. We’re more friends than any other label right now.”
Hermes marvels at the lives Joel and Anna lead, given the effects of SMA.
“They’re incredible and so inspirational. They set a great example for everyone.”
Holly Johnson, a physical therapist with Children’s Developmental Center in Rockford, has known Joel and Anna since they were babies.
She said infancy is an ideal time to begin physical therapy. Johnson said it’s common for babies to have more use of their muscles than it is for adults because of SMA’s muscle-robbing characteristics.
Johnson no longer treats Joel and Anna, but her friendship with Elaine remains strong thanks to a women’s support group they attend and through Bible study. Johnson lent the family the use of her van when the Goukers’ van broke down. She also helped organize an April 8 benefit, which raised $40,000 to help Elaine buy a new van.
Looking ahead
Uncertainty and a measure of excitement lie ahead for Joel and Anna.
This time next year, both will have earned associate’s degrees and will embark on a new chapter in their lives — enrolling in a four-year college taking online classes at home or preferably living on campus.
“We’re still looking at all our options,” Anna said. “For us, picking a college is a lot different than other students. We have to look at accessibility. How open are students and teachers?”
Elaine understands her children’s quest for independence.
“I feel like I’m on the phaseout,” she said. “As they become adults, they need to feel they have some independence. I’m trying to help them reach that.”
One thing that seems certain is that no matter where they enroll, Joel and Anna will be together.
“He’s stuck with me,” Anna said. “He’s been stuck with me for 20 years. Why stop now?”
Medically, while doctors are still learning about SMA, Dr. Mann knows plenty about the fortitude of the Goukers.
His prognosis:
“They’re going to be with us a long time.”
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