Photo: Luellen Seals tells her daughter, Meagan, about her new chair thanks to the efforts of Lord of Life Church and Lutheran Church Charities. The special wheelchair was delivered to the Seals family home in Blackberry Creek on Friday, Dec. 23. Photo by John DiDonna
Community donates wheelchair for 2-year-old who defies all odds
By Keith Beebe
ELBURN—Scott and Luellen Seals of Elburn had spent the last year in search of donations to be put toward a custom-built wheelchair for their 2-year-old daughter Meagan, who suffers from the conditions encephalocele, microcephaly and lissencephaly.
The Seals’ insurance provider considers Meagan “terminal” and doesn’t cover any of her medical costs, so the family had no way to pay for an expensive chair that would allow their daughter to physically develop and move more freely.
Then, on Dec. 23, a group of 60 Christmas carolers gathered in front of the Seals’ home and presented the family with three surprise gifts: a custom-built wheelchair, an iPad and a stationary chair for Meagan.
“At first, I thought, ‘Look, they’re Christmas caroling,’ and I didn’t think anything of it. And then I saw a few people taking pictures, so then I wondered why they were (doing that),” Luellen said. “When I saw the wheelchair and the other chair coming up the driveway, I started crying because I knew what they were up to.”
The carolers, which included members of Lutheran Church Charities and the Seals’ church, Lord of Life Church in La Fox, were the ones who donated money for the three items. The wheelchair is valued at just under $6,000, and the stationary chair and iPad are each valued at $500.
Conley Outreach and Kaneville United Methodist Women also donated money toward the wheelchair.
“I met the Seals family two years ago, shortly before Meagan was born. Some of their neighbors had invited them to come to Lord of Life during Luellen’s pregnancy,” Lord of Life Church Pastor Phil Ressler said. “They had been told to have an abortion because Meagan would not survive the delivery. In spite of the grim outlook, Meagan was born.”
Pastor Ressler earlier this month told Lutheran Church Charities President Tim Hetzner about the Seals and their pursuit of a chair for Meagan. Hetzner called the chair manufacturer in Matthews, N.C., but was told that the wheelchair couldn’t be built until the Seals’ insurance provider approved payment for the item, and even then, it would take three months for the chair to be built.
“I explained the Seals’ situation to (the manufacturer) and guaranteed the payment of the chair, but told them we had to get it by Christmas Eve,” Hetzner said. “They called me back, moved some things around, made the chair that day and overnighted it to a place in Lombard (Ill.). That Friday (Dec. 23), we took the chair plus an inside chair that was needed for little Meagan.”
According to Hetzner, the iPad was donated because it has several apps that handicapped children can use to develop sensory skills.
Encephalocele is a neural tube defect where the brain begins to form outside the human skull. Microcephaly is a disorder where cranium circumference is considerably smaller than average, and lissencephaly is a disorder where the brain is smooth, resulting in severe neurological impairment.
“We knew before she was born that she was going to have an issue with her brain, but we weren’t sure exactly what the extent of her (condition) would be,” Luellen said. “Doctors have told me that one out of 10,000 pregnancies each year will result in this condition, and those babies are usually stillborn or die at birth. If they do survive, they’re usually on oxygen or a feeding tube.”
After Meagan was born, her doctors noticed that she was developing physically and breathing on her own despite suffering from encephalocele. Meagan then underwent a surgery to repair her skull, which was when doctors realized she was suffering from other conditions, as well.
“They told me that, with lissencephaly, Meagan probably wouldn’t live very long, so they sent us home with hospice. Here we are, two years later, and Meagan’s still with us,” Luellen said.
Meagan is the youngest of Scott and Luellen’s four children, including Ryan, 22, Madison, 5, and McKenzie, 3. The Seals family has a Facebook page, Meagan Seals Miracle Baby, which is meant to tell Meagan’s story.
“I want to get the word out about Megan’s story—not for financial reasons, but because through Facebook, we’ve met quite a few families who have children with disabilities similar to Megan’s or have families with terminal children,” Luellen said. “It’s been nice to meet other families that are going through what we’re going through.”
Meagan continues to slowly develop physically, but she is very handicapped mentally and physically, unable to crawl, walk or even sit up on her own. Still, she knows her name, recognizes her sisters and smiles at the sight of specific toys. Meagan also loves to listen to classical and jazz music.
“She loves to sit in her swing and rock back and forth, and there’s a lot of things she knows. She’s developing at her own pace,” Luellen said. “It’s been a struggle and constant worry for us; however, it’s been a blessing in so many ways, as well. She’s really changed our lives.”