When you first meet Jolene Knopick, it’s hard not to be inspired by the 23-year-old woman who’s lived with an incurable, debilitating disease since she was barely two years old.
Jolene was conceived after her mother and father, Larry, went through five years of infertility and thought they’d never be able to have children. The Knopicks were eager to meet their new little one and made a playful pact—if they had a daughter, Larry would name her, and if they had a son, his wife would choose the name. Larry had met someone named Jolene and thought it was the most beautiful name he’d ever heard. So he gave the name to his baby girl whose birth was an answer to his prayers.
“I always wanted a girl, and I prayed every day for one,” Larry says. “She was perfect, and I couldn’t believe she was mine.”
Jolene was growing and learning on schedule and appeared to be healthy and strong until she was around 18 months old. She’d reverted to crawling after having learned to walk and Larry couldn’t understand why. Initially Larry and his wife weren’t too concerned—friends and family had suggested Jolene may have taken a tumble and was afraid to get back up. When the crawling continued, Jolene’s pediatrician recommended she be seen by a specialist if she wasn’t walking again by her second birthday. Jolene’s mobility continued to decline.
“I tried to stand her up at almost two years old—it was like trying to stand up a Raggedy Ann doll; she was so limp,” Larry says. “She was also crawling a lot slower, so I knew something was up.”
The Knopicks took Jolene to a specialist in Chicago where, after a blood test, Jolene was diagnosed with spinal muscular atrophy (SMA), a genetic neuromuscular disease that can affect walking, swallowing, or breathing and can worsen over time. Jolene has SMA type 2, the second-most severe of the disease’s four types. One in 11,000 babies are affected by SMA, and 1 in nearly 50 people carry the gene.* Because both Jolene’s mother and Larry carry the gene, every pregnancy would have had a 25% chance of having a baby affected by SMA.
Jolene’s diagnosis was a tough blow to the Knopicks, but Larry remained calm and clung to his faith. “I didn’t break down and cry,” he says. “I accepted it and so did her mom.” They found support in their community and local church, Quentin Road Baptist Church in Lake Zurich, Illinois, where everyone loved Jolene and the pastor made sure to include her in church activities and Christmas plays. Nevertheless, Larry wondered what life would be like for his daughter who was confined to a wheelchair with a progressive muscle-wasting disease.
Aside from living with SMA, Jolene says she was a happy kid who wasn’t much different from other children her age. She watched Nickelodeon religiously, learned video editing by age 11, and attended public school full-time. “I liked to use my imagination a lot, and like any typical kid I liked to hang out with my friends,” Jolene says. “I liked math, English, and science. In junior high I was in the choir.”
Jolene used her gift of singing for more than 10 years leading songs during monthly church services at Pacific Garden Mission in Chicago, a faith-based organization serving the homeless. She ministered alongside Larry at the services and saw several hundred homeless people attend, many of whom showed up just to hear her sing. Jolene’s faith in God also blossomed, and she was able to stay positive on a path paved with difficult circumstances. “If it wasn’t for the Lord, I know her attitude would not be half as good as it is,” Larry says.
While God was using Jolene in ministry, Larry and his wife began struggling in their marriage. In 2006 when Jolene was 10 years old, they ended their 15-year marriage but were able to maintain a friendship. Larry received sole custody of Jolene and continued raising her in the Chicago area. As Larry and Jolene faced their new life together, the father and daughter became closer than ever.
By eighth grade Jolene started experiencing muscle weakness that affected her ability to remain in public school full-time. She was then homeschooled until the SMA progressed and slowed her pace in completing her schoolwork. She faced staying in high school years past her expected graduation date, so she accepted a certificate of completion, a level lower than a GED. “[The certificate] doesn’t qualify you for that many jobs,” Jolene says. “But at the time that’s what I felt led to do.”
When Jolene was 18, both she and Larry went through a dry season in which they were no longer thriving in ministry and felt disenchanted about their futures. Lingering effects of Larry’s divorce and coping with SMA had taken their tolls on them, and Jolene and Larry found themselves staying home more. Jolene thought about moving to another state for a fresh start and also for a warmer climate. Chicago’s frigid temperatures gave her frostbite and eventually kept her inside during winter months. Larry had a stable job as a bus driver for 18 years but he was open to relocation. He knew Jolene was seeking the Lord’s direction for her life and wanted to support her any way he could.
Jolene’s first choice was San Diego, California, but none of the churches she found online seemed like a fit. She also never felt peace about moving there. She remembered wanting to visit Gateway Church in Southlake where her favorite worship leader, Kari Jobe, attended and thought Texas might be a good place.
“I felt this prompting to move to North Texas to attend Gateway,” Jolene says. “I passively brought it up to Dad and explained how it was Kari Jobe’s church, and he thought that was interesting. After a few months we stopped talking about San Diego and started talking about Texas.”
Larry didn’t have a preference either way—he just wanted Jolene to be happy. He also felt the cross-country move might be part of God’s plan to change their lives. But after arriving in Texas in 2015, Larry felt regret and fell into a deep depression. He hated his new bus driving job where he had a bus full of unruly and disrespectful high school kids. He was also having difficulty with Jolene’s new doctors and getting the resources he needed to manage her healthcare including finding a long-term caregiver to care for Jolene while he worked. Larry’s anxiety became so severe that he had to quit his job, and he began suffering financially. While he was under a lot of stress he also believed he was being attacked by the enemy.
“A few months after we moved here, I was given Pastor Robert’s book The God I Never Knew and I got serious about the Holy Spirit,” Larry says. “I felt a lot of oppression from the enemy that contributed to the anxiety. The devil knew I was serious about God and getting healed emotionally and spiritually.”
Jolene didn’t like seeing her father so hopeless, so she prayed God would send Larry some encouraging friends. God sent several people from Gateway into their lives to pray for them and show them support. Larry also received spiritual and financial
counseling and assistance from Gateway ministries. While blessings and community poured in, Larry and Jolene continued to pray for something even bigger—Jolene’s physical healing.
With SMA, the only time Jolene is not in her wheelchair is when she’s sleeping at night or resting every two to three hours during the day due to muscle weakness and soreness from leaning over in her wheelchair. Throughout the night as she sleeps, Larry must flip her body several times so she can maintain a comfortable resting position. Because Jolene is unable to sit up in her wheelchair for long periods of time, she has to travel lying down during van rides. Her left arm and hand barely move, and she has very little use of her legs. She does have partial use of her right arm and hand.
In fall 2015 Jolene attended a Gateway Habitation service where she asked God to strengthen her faith. A couple days later she attended a Gateway Young Adults service and was approached by a cameraman who wanted to know more about her condition. “He asked me flat out, ‘Do you believe God can heal you?’” Jolene says. “I started thinking maybe this was the Lord answering my prayer and showing me this was the route He wanted to take me.”
Jolene started attending healing services at Gateway where she received confirmation after confirmation that she would be healed. Several other people have told her God has given them dreams and visions about her healing. One time before a service at the Southlake Campus, a woman who had previously prayed for Jolene came up to her with tears in her eyes.
“I had asked God if He would show up to me in a special way, preferably at church that day,” Jolene says. “The lady came up to me out of the blue and said she had this vision of me dancing near the platform and twirling around. She said the Holy Spirit told her to buy me ballet slippers. I felt overwhelmed with God’s goodness and how faithful He is to prayer.”
As Jolene waits expectantly for her healing, she finds joy and purpose in encouraging others who are enduring tough times. She uses her computer to make videos and slideshows, she draws spiritual artwork, and she writes Scripture on cards that are fastened to the front and back of her wheelchair to inspire others.
“I call it my ‘heal chair,’” Jolene says. “I like to write poetry about redemption and life and put it on index cards and put art with it. It’s not just for me, I do it for other people. I’ve had testimonies from people who were going through a hard time.”
Nearly three years ago, Larry started working for Kindred Healthcare as Jolene’s full-time caregiver which was another answer to prayer. He’s able to give Jolene the 24/7 care she needs and make a living at the same time. Even so, nothing has surpassed his joy in seeing Jolene grow in her faith and be loved and supported by their Gateway family.
“One of my biggest goals when we moved to Texas was to see my only daughter flourish and grow in the Lord,” Larry says. “I also prayed she’d have friends, and she has lots of friends.”
Jolene hopes others will join her in never giving up on what they’ve been praying for, even if it seems they’ve been waiting a while to see it come to pass.
“You never know what could be right around the corner,” Jolene says. “There could be a reason there’s so much resistance in your life, because I believe when you’re in God’s will, the enemy hates it and will try to stop the will of God. But since we’ve been faithful and pressing through, we’ve seen miracle after miracle.” Larry and Jolene attend the Southlake Campus.
*Learn more about spinal muscular atrophy at curesma.org.