Sean C. Morgan
Of The New Era
Misty Glover has a tear of sadness in her eye but a smile of joy on her face as she watches her son open and close the front door as if it were some fantastic toy.
Her son, Tyler Mahannah, is a busy little guy who will turn 6 in July. He loves pushing buttons and flipping light switches, which gets him a scolding from his dad, Mike Mahannah.
Tyler brings many challenges to their lives. He has a rare genetic disorder called Cornelia de Lange Syndrome (CdLS). The syndrome has a wide range of symptoms, affecting appearance and health, and his mother was told he would likely never see his fifth birthday. So far, he has defied those odds, but his parents know it is a matter of time before the condition proves fatal.
Tyler has many of the distinguishing features of CdLS, including eyebrows that meet above the nose, an upturned nose, downturned lips, partially joined second and third toes and extra hair growing on his back. He was born small. He has grown slowly and is undersized for his age.
His appearance is not extreme. Many children suffering from CdLS have deformed hands and arms.
He has suffered from most of the physical problems CdLS causes, which can include heart defects, gastroesophageal reflux, seizures, eye problems, hearing loss and bowel abnormalities.
CdLS also results in some level of retardation, usually ranging from mild to moderate. Some children with the condition may have normal or borderline intelligence.
All of the children have the same signature laugh and cry, Glover said.
His parents say that, despite the challenges, Tyler has brought many smiles to their faces and joy to their lives.
He learned to walk in September, and he is just beginning to speak. He mumbles an enthusiastic, “nice to meet you,” when introduced to new people. He can hear, He but he communicates mostly through sign language.
Glover wants to raise public awareness of the disorder. It affects one in 10,000 to 30,000 live births, according to the CdLS USA Foundation. Many with the disorder remain undiagnosed, and the foundation is dedicated to identifying those children, reaching out and helping families dealing with CdLS.
The disorder is named for the Dutch pediatrician who described two children with similar features and the collection of symptoms caused by the syndrome in 1933.
The gene that mutates and causes CdLS was identified in 2004, Glover said.
CdLS does not usually affect more than one child in a family. Tyler’s brother, Brenden, 6, does not have it; and Katyrina, 7 months, appears normal.
May 13 was CdLS awareness day, and Tyler received a special treat with a party at Sweet Home Lanes where he was visited by local paramedics and Sweet Home Police Officer Carolyn Dimick. Linn County Sheriff’s Sgt. John Lovik visited him at home in the Foster area later that day.
The Make a Wish Foundation also came through for Tyler this year, providing a flat-screen television and DVD player along with 13 Elmo DVDs. Tyler especially loves Elmo and carries a stuffed Elmo around with him as he explores his home. The family had talked about a Disneyland trip but decided it could set off seizures and abandoned that idea.
The big TV will be helpful because Tyler was destroying the family’s little TV because he enjoys pushing buttons and kept playing with it, Mahannah said.
Tyler was 2 when he was diagnosed with CdLS, Glover said. Until then, his condition caused a variety of problems for Glover and Mahannah.
Tyler weighed only 6 pounds 10 ounces at 1 year old. At 2, he weighed 14 pounds.
“He’s on his own curve,” Glover said, but in Colorado Springs, Colo., where they lived at the time, the local social services department got involved when he got sick.
“He was spitting up everything,” Mahannah said. “He was really pale. They didn’t know what to do. They had to report it to DHS.”
Attorneys got involved after subsequent accusations of child neglect, until a CdLS diagnosis finally cleared them of any fault.
Tyler was diagnosed in 2002 when a doctor provided the family a pamphlet on the disease. The CdLS Foundation reviewed photos of Tyler, and eventually confirmed that Tyler had the disorder.
Tyler creates challenges at home, but “he’s ornery,” Glover said. “He’s a typical little boy. He’s developmentally slower. He’s got profound mental retardation.”
Tyler’s parents constantly think about his condition.
“I think about the changes we have had to make, but I would never change it,” Mahannah said. “It’s simple things people take for granted.”
“He shows us what life is all about,” Glover said. A neighbor goes outside and yells, “‘I hate my kids.’ It’s hard to hear other parents talk about their kids that way because we’ve almost lost ours.”
The family moved to Sweet Home from Colorado in January 2004, and Mahannah works for Weyerhaueser Foster Mill.
Glover stays at home with the children, she said. “Tyler’s high-maintenance but not really high maintenance. You’ve got to keep an eye on him.”
Glover said Tyler’s condition is good right now.
“He’s healthier now than he’s ever been his whole life,” she said, but that doesn’t mean he’s out of the woods. Tyler’s life can end with little notice. He looks healthy, but he has many health issues. He sees a doctor ever month or two, especially in the winter when colds and the flu are more prevalent and dangerous to his immune system.
When they learned of Tyler’s CdLS, “my first question was, why us?” Glover said. “What did we do so wrong we’re being punished like this?”
But, she said, “When you’ve had a really hard day, Tyler can look at you and smile and your day’s fixed. He makes us happy on a daily basis.”
“He keeps us happy pretty much every day,” Mahhanah said. “We keep him happy. As long as he’s happy, he’ll live.”
“It’s been easy and hard,” Glover said. “I would trade not one thing we’ve gone through. Everything has taught us something.”