All for Ethan
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| Ethan Blankenhagen, 11, of LaMoille takes some time to pose for a photo with his mother, Mary Anne Schwingle. Ethan was diagnosed with cerebral palsy just before his first birthday. To help with mounting medical bills, the village of LaMoille is planning an all-day benefit on July 17. (BCR photo/Donna Barker) |
LAMOILLE — Ethan Blankenhagen is 11 years old, and he likes to play baseball, basketball and soccer — basically any sport. He likes to ride his skateboard, go camping and play video games. He’s a straight A student in school, where he likes art, lunch and recess. He sometimes like to tease.
Her son is a typical 11-year-old boy, except he has cerebral palsy, Mary Anne Schwingle said.
Five days before his first birthday, Ethan was diagnosed with cerebral palsy, which is a condition which may affect movement, learning, hearing, seeing and thinking. The condition is caused by an injury or lack of oxygen to different parts of the brain, Schwingle said.
During Ethan’s first year, he cried a lot during the day but slept well at night, his mother said. At 6 months or so, he wasn’t holding his bottle or consistently rolling over. At 8 months, a pediatrician recommended physical therapy through Gateway Services. A couple months later, she was able to get Ethan into see an Easter Seals specialist in Peoria, who diagnosed Ethan within minutes with cerebral palsy.
Since that time, Ethan has had four surgeries on various muscles and is scheduled to have another surgery on July 27. He’s continued with physical, occupational, developmental and speech therapy through Gateway Services and his school. Cognitively, her son is age-appropriate and mainstreamed into regular classes at school, Schwingle said.
Ethan is a determined young man. He plays his basketball and baseball from his wheelchair. To use his skateboard, Ethan crawls on the board with his knees. In spite of his physical challenges, his son’s life and abilities were no accident, his mother said.
“I don’t think God ever makes a mistake when He makes a child,” Schwingle said. “Ethan is such a blessing. He’s the perfect child for me.”
Raising a child with special needs may have its challenges, but it is simply life as she’s known it for the last 11 years, the LaMoille woman said.
“I think my adjustment was easier because Ethan is my first child, my only child,” Schwingle said. “This is all we know life to be like for us.”
Schwingle has been very proactive and open with Ethan about his cerebral palsy. Ethan stays in the room when his mom talks with the doctors. He knows what medicines he’s taking. He knows what to expect with his surgeries. He knows what he needs. His family doesn’t shelter Ethan from the realities of his life.
“Ethan is the one who is going through this,” Schwingle said. “This is Ethan’s life. We are kind of the outsiders walking with him through this.”
Fortunately, many of Ethan’s medical expenses, like his therapies, medications, and a $40,000 automated wheelchair, are covered through public aid and insurance. Numerous other expenses, such as special $12.50 pairs of socks or shoes are not covered.
Another expense is the extensive remodeling Schwingle and her husband, Dave, are doing on their LaMoille home to make it more accessible for their son. They’ve knocked down walls, enlarged hallways and added rooms. A ramp has been built onto the front of the house.
Part of the remodeling project also includes installing an elevator in the house, so Ethan can get from the main floor to the basement, where the Schwingles are putting in a therapy room for Ethan, as well as a family room, laundry and other rooms. In time, the Schwingles envision Ethan living independently in the home, maybe with his own family.
To help the Schwingles with the $32,000 installation cost of the home elevator, the LaMoille community is planning a special benefit July 17 at the LaMoille Lions Club. The all-day event will run from 11 a.m. to 11 p.m. and will include food and beer tents, a poker run, fun fair, a Mr. Benefit contest, live auction, and live music by Hour Tyme. A $10 cost includes food and entertainment.
The Ethan Blankenhagen Benefit Committee, chaired by Patti Schultz, has previously planned a couple bake sales. Most recently, a bake sale was held at the Red Brick Cafe, where some of Ethan’s classmates ran the bake sale while others served as waitresses for the cafe. Other young people helped in the kitchen. All tips and donations were given to help with Ethan’s benefit, his mother said.
All things considering, Ethan considers himself lucky to be chosen by God to have cerebral palsy, Schwingle said. His mission is to tell others about cerebral palsy and to help people realize people with special needs aren’t really so different, she said.
According to Ethan’s grandmother, Dona Becker, people with cerebral palsy or other special challenges don’t need to be pitied. Sometimes, when people learn Ethan has cerebral palsy, they call him “the poor thing,” which doesn’t set good with her, she said.
“Ethan is not a poor thing,” his grandmother said. “He’s a gift to us and to the world.”
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