Sometimes, just knowing you are not alone can provide that extra bit of strength to push through whatever struggle lies ahead.
That’s why a young boy’s birthday party held Saturday at the Hecker Sportsmans Club — complete with a balloon lady and plenty of John Deere tractor decorations — was special on so many levels.
Although his birthday is actually Aug. 14, the party for 4-year-old Landon Cowsert was delayed due to ongoing complications of a rare genetic disorder known as Williams Syndrome.
“He’s been through hell and back,” said his mother, Raylene Sebastian.
Landon went into surgery around the time of his most recent birthday. His arms were starting to grow in a manner which they turned outward making it difficult for him to grasp objects. Doctors broke both of his arms at the elbow and wrist and inserted pins as a corrective measure.
It was just another trip to the hospital for Landon, who has dealt with a myriad of health issues in his young life. He’s also had balance problems due to his legs having similar growth problems as his arms, and requires tubes in his ears because of excessive fluid, which affects hearing.
In general, Williams Syndrome is characterized by mild to moderate mental retardation or learning difficulties, distinct facial features, unique personality traits and feeding problems. The most significant medical issue associated with Williams Syndrome is cardiovascular disease caused by narrowed arteries.
“Right now, he has more physical issues than heart problems,” Raylene said of her son.
In between trips to the hospital, Landon attends teacher Traci Biffar’s early childhood special education class at Zahnow Elementary in Waterloo.
Williams Syndrome occurs once in every 10,000 to 12,000 births. There is no cure, nor is there a standard course of treatment. The prognosis for those with the disorder varies, but by age 30, many of them have diabetes or pre-diabetes and mild to moderate hearing loss.
Dave and Valerie Baxmeyer of Waterloo are very familiar with Williams Syndrome. Their 15-year-old daughter, Erynn, has the disorder.
“She sure likes to talk,” Dave Baxmeyer said as his daughter introduced herself to this reporter at Landon’s party. Soon after, Erynn cheerfully sang “Happy Birthday” to Landon.
Valerie Baxmeyer said her daughter has not really encountered the problems Landon has, although Erynn does need to go in for regular heart checks.
“She’s been fairly healthy so far,” Valerie said. “We understand that as they age, things can get worse.”
Erynn participates in the transition program at Waterloo High School.
For Landon’s mother, as well as his father, Paul Cowsert Sr., and grandparents Regina Cowsert and Myron and Cindy Neff, the lack of knowledge of little Landon’s disorder in the local medical community has been surprising.
“It was amazing that very few doctors had heard of it in this area,” Raylene said.
So, last year, Raylene wrote about her son’s situation in a letter to State Senator Dave Luechtefeld, asking that Illinois pass a measure to join the list of states that recognize Rare Disease Day on the last day of February each year (Feb. 28 or 29).
“It is our chance to educate our communities and cities on what these rare diseases are,” she said.
While disorders such as sickle cell anemia and congenital hypothyroidism are included in the original Rare Disease Day designation in other states, Luechtefeld went a step further to make sure Williams Syndrome is included in Illinois.
The measure was passed in the Illinois Senate on Feb. 28, recognizing Rare Disease Day. Raylene said this will raise awareness for disorders such as Williams Syndrome and hopefully lead to fundraisers for research and other positive efforts in the future.
As a special treat to her father, Myron Neff, Raylene kept word of this new bill under wraps until Landon’s birthday party on Saturday.
“The two are attached at the hip,” Raylene said of the bond between her dad and Landon.
With family and friends gathered at the Hecker Sportsmans Club — including the Baxmeyers and their daughter Erynn — Regional Superintendent of Schools Kelton Davis read the official resolution of the bill on Luechtefeld’s behalf.
“I have followed Landon’s progress since he was a newborn,” Davis said. “I was honored to present the senate resolution to Landon and his family. The most impressionable part of the resolution is recognizing that rare diseases impact a relatively small number of people in the nation. However, it was a wake-up call that the majority of those inflicted with a rare disease are children. This simple fact affirms the need for increased attention and action as these children need our support.”
As for Raylene’s father, it was difficult for him to keep a dry eye once the surprise was unveiled.
“This is a special day,” an emotional Myron Neff said.
The family would like to extend special thanks to Dr. Joseph Cangas of Illini Pediatrics in Columbia for all of his extra help with Landon.
“He’s basically been our rock,” Raylene said.
A reading of the bill by Regional Superintendent Kelton Davis: