Luke's mom fights for son despite odds
Lee Benson
She does not add that if it would help, she would wear those ribbons standing on her head in the middle of Times Square. But you know she would.
Got a spare hug in your heart this Mother's Day 2005? Send it Deanna's way, in honor of mothers everywhere who will fight and scrap and hustle with every nerve and sinew in them against anything and everything harming their children.
In Deanna's case, that means an insidious disease called tuberous sclerosis (TS) that attacked her middle son, Luke, almost two months before he was born. By the time he drew his first breath, the disease had sucker-punched the boy with tumors throughout his body, including his brain, heart, eyes and kidneys. He entered life with epilepsy, autism and cancer.
That was March 22, 1996.
There hasn't been a day since that Luke's mom — all five feet and 100 pounds of her — hasn't fought for her son.
She's become an authority on TS (it strikes one in 5,800, the same rate as cystic fibrosis), she's organized research conferences, she's held benefits, raising hundreds of thousands of dollars; she's set up a Web site (www.lukets.org), she's lobbied Congress, and just yesterday, she led the first-ever-and-if-she-has-anything-to-say-about-it-annual Utah Tuberous Sclerosis Walkathon at Wheeler Historic Farm.
"I try to stay positive and I try to do what I can," understates Deanna, who gives all the credit for any of her motherly instincts to her own mother, also named Deanna, who was a special education teacher. "She was the most wonderful mom; she taught me so much," Deanna says, using the past tense because the original Deanna died last September at the age of 61 from Lou Gehrig's disease.
Deanna cared for her mother till the end, not to mention her other sons, Nick and Jake, and three stepdaughters, Jenny, Natalie and Emily. But that didn't stop her from fighting as hard as ever for Luke.
"He has a difficult time interpreting the world, and the world has a difficult time interpreting him," she says. "It's my job to help with that."
When she was younger, dreaming of motherhood some day, Deanna had no idea, of course, that it would entail all it's entailed.
"I was a cheerleader," she says wistfully, "I had it made."
But that's not to say she doesn't have it made now.
It's just tougher, is all.
"There was a time early on when it was, I don't want to say dark, but difficult," she says, "It was when Luke was maybe 7 months old and I was doing a lot of soul-searching and praying, and I had this life-defining moment. I realized that even though there was so much out of my control, I could still be empowered to do everything I could to increase my child's quality of life."
The proof that she's been doing that ever since is the 9-year-old who is enrolled as a third-grader at Willow Canyon Elementary School in the Jordan School District's special education program. Luke Wall doesn't know all of his ABCs yet, but he knows some of them, and he can count all the way to 15.
And somewhere, deep down where instincts live, he's got to know he has one terrific mom.
Lee Benson's column runs Sunday, Monday, Wednesday and Friday. Please send e-mail to benson@desnews.com and faxes to 801-237-2527.
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