Golf scramble proceeds will go for research of spinal muscular atrophy
By William K. Alcorn
The Aubrey Grace Lyden Memorial Golf Scramble is a tribute to the life and memory of Dannete and Sean Lyden’s infant daughter who died of Spinal Muscular Atrophy on Easter Sunday morning, April 24, 2011.
Born on Sunday, July 4, 2010, Aubrey, didn’t live to see her first birthday.
“There is a reason she was here,” said her mother, tears flowing as she re-lived the heartache.
“We didn’t want her to have died for nothing. We knew we wanted to raise awareness about SMA and money for research. We’d like to see doctors routinely test for SMA,” Sean said.
Because most of the men in the family are golfers, it seemed natural to organize a golf fundraiser, he said.
The event, which includes an auction and food, is from 8:30 a.m. to 6 p.m. next Sunday at Lakeside Golf Course, 2404 SE River Road in Lake Milton.
The Lydens’ goal is to raise $10,000 for Families of Spinal Muscular Atrophy, a group dedicated to finding a treatment and cure for SMA, a disease Aubrey’s unsuspecting parents had never heard of.
During Dannete’s pregnancy and initially after Aubrey’s birth, everything seemed normal.
Routine tests done at birth detected nothing unusual, and Aubrey’s development was on track.
She was a smiling, happy baby who liked watching Notre Dame football on TV with her dad, actually any football admitted Sean, a die-hard Notre Dame fan.
Her favorite TV show was the “Mickey Mouse Club House,” and she liked anything bright and shiny and holding a ribbon in her hand.
“That’s how she explored her world,” Sean said.
But at 6 months old, she still could not hold her head up or roll over.
Concerned, her pediatrician ordered an MRI, or magnetic resonance imaging, at Akron Children’s Hospital of the Mahoning Valley in Boardman. That turned up nothing abnormal.
Genetic testing, however, revealed Aubrey had SMA, a disease inherited from her parents who are carriers but do not themselves have symptoms.
Aubrey was diagnosed March 7, 2011.
“We were sitting in the doctor’s office. The pediatric neurologist told us flat-out there is no cure and no treatment for SMA. Take Aubrey home and love her.”
“I was frozen ... in shock. I didn’t know what to do,” Dannete said.
“She just came home and cried and cried,” Sean said.
There is no good way to deliver news like that, Sean said. “The people at Akron Children’s were great”.
Take Aubrey home and love her is what the Lydens and their families did.
Aubrey’s grandparents, Ilona and Rick Kubic, Dannete’s mother and stepfather, of Canfield, and Don and Linda Lyden of Austintown, helped care for the infant while her parents worked.
Dannete is a licensed optician at JCPenney Optical in Southern Park Mall, and Sean is receiving manager at Lowe’s on South Avenue in Boardman. Both 32, Dannete is a 1998 graduate of Jackson-Milton High School, and Sean graduated the same year from Austintown Fitch High School.
After hearing Aubrey’s diagnosis, the Lydens set out to learn about SMA, the disease they had never heard of that took their daughter’s life.
They discovered that most others also had no knowledge of SMA. They learned the disease is the No. 1 genetic killer of children under the age of 2.
Dannete and Sean were tested and discovered they are carriers of the inherited disease, but they could find no history of SMA in their family. Other family members have been or are being tested for SMA.
Spinal Muscular Atrophy comes in Types I, II and III in children, determined by the age of onset and the severity of symptoms. SMA belongs to a group of hereditary diseases that cause weakness and wasting of voluntary muscles in the arms and legs of infants and children.
The disorders are caused by an abnormal or missing gene known as the survival motor neuron gene 1 (SMN1), which is responsible for the production of a protein essential to motor neurons.
Type I, Aubrey’s diagnosis, is the most-severe type of SMA, also known as Werdnig-Hoffman disease or infantile-onset SMA.
Still, Aubrey did not have problems breathing or eating “until she got sick” Easter week 2011.
“I thought she was getting a cold. She seemed to be getting better, but on Good Friday, she couldn’t keep anything down and was not herself,” Dannete said.
The Lydens took their daughter to the hospital. She had pneumonia, and one lung had collapsed. Aubrey did not have the strength to fight the infection and died Easter Sunday morning.
Her parents are determined to give lasting meaning to Aubrey’s short life by raising awareness of SMA and money for research.
To register for the Aubrey Grace Lyden Memorial Golf Scramble, call Mitch Blazek, course superintendent, at 330-547-2797.
The golf scramble registration fees are $65 a person or $260 for a four-person team, which includes dinner; or $10 for the dinner and auction only, which includes signed Cleveland Browns and Cleveland Indians items and Youngstown State University football tickets.
People who are not participating in the scramble but who want to donate can send a check or money order to Families of SMA, 925 Busse Road, Elk Grove Village, IL 60007 and place AGL Outing on the memo line.
“We’re going to try to do the Aubrey Grace Lyden Memorial Golf Scramble for 10 years,” Sean said.
A year after Aubrey’s death, her parents have entered a new chapter in their lives. Aubrey had no siblings, but in January, she will have a sister.
Dannete is pregnant, and the unborn child has been tested for SMA.
“It was a pretty tough three weeks waiting for the results of the test. We were on vacation when we got the call on July 19,” she said.
The results: Their unborn daughter is an SMA carrier but will not otherwise be affected by the disease.
“We will always miss Aubrey, but a part of me feels I can now move forward. You learn to move on,” Dannete said.
They purchased a family plot in Lake Park Cemetery in Boardman where Aubrey is buried “so she’ll always be with us,” Sean said.
“Every day or so, something reminds you of Aubrey. We visit her every day. I wave to her when I drive by the cemetery.”