Silas surprises, inspires
FAIRMONT – “Serious Silas,” that’s what Silas Borntrager’s parents used to call their stoic little infant, until they found out the cause.
Lissencephaly is a rare disorder – affecting only 1 in about 86,000 children. It literally means “smooth brain,” and the abnormal development causes irregular brainwave activity for Silas. In April 2011, he was hospitalized when his parents first detected seizure activity, and that’s when doctors determined the diagnosis.
Silas, who turns 3 in September, has lost his old nickname. He curiously watches his surroundings, smiling and talking gibberish except for an occasional “Mama” or “Baba.” Motioning with his hand, he is able to communicate to his parents, Karen Osmundsen and Shane Borntrager, that they need to push his toy piano keyboard closer to him.
“When you spend every day with somebody, you know exactly what he’s talking about,” Karen said as she held her son on her lap, occasionally reminding him to hold his head upright.
When his dad brought out an iPad – or SiPad, as they call it – Silas quickly became absorbed in popping bubbles on the screen.
“He was never supposed to say a word or be able to move around,” Shane said as he proudly watched his son, explaining that the child was not only having fun but also working on improving his motor skills.
Shortly after Silas was diagnosed, a geneticist in Rochester explained to his parents the circumstances that cause lissencephaly, and they then passed the information on to friends and family through a Caring Bridge site.
“It is a completely random occurrence that has no cause and could never be detected nor prevented. It is highly likely that it was passed from myself (Shane) to Silas. This however does not mean that if we decided to have another child that he/she would be at any greater risk,” Shane wrote in a July 25, 2011, Caring Bridge entry.
“This deletion can happen to anyone at any time. It is not something that I carry in my body, but rather an error made when my cells duplicated. This occurs in all of us at a rate of approximately 11 in 40 million – one just happened to be the cell that made Silas. The error happened to be at the beginning of the instructions that specified how the brain will be structured. If it was nearer the end it could have had less, or no effect, but because it is at the beginning it had a profound effect on Silas’ brain.”
The explanation is far from simple, and it’s further complicated for Shane because he understands the seriousness of the situation but doesn’t want to sound dire. Only 50 percent of children with Silas’ type of lissencephaly live to be 10, and few make it to 20. They struggle with feeding problems, poor respiratory control and weak immune systems, putting them at high risk for pneumonia, their No. 1 cause of death.
“I don’t want anybody to feel sorry for Silas, or for us,” Shane said, but he will gladly talk about his son to anyone who is interested, partly because he clearly adores his little boy, but also because he wants to educate people about the condition, which is why he is in the process of slowly updating the Wikipedia page on lissencephaly.
“The first time someone says, ‘Oh, lissencephaly, I’ve heard of that,’ I think I’ll drop dead,” Shane said, laughing.
Silas’ mother hopes by sharing their story that people won’t pity Silas or the family, but instead be inspired by Silas’ determination and cheerful spirit.
“He’s such a good boy, and he works so hard every day to do what he does,” Karen said.
The change in Silas’ serious demeanor and improvements in his development came with the medication that has controlled his seizures, which are called infantile spasms. Silas went almost two years without a seizure, until recently, and his parents had to decide whether to increase his dose or try a different medication. They know he will eventually outgrow the infantile spasms and start having a different type of seizure. They chose to double the dose, since the medication Silas has been taking has worked so well. For the time being, their decision seems to be the right one.
“Not knowing, that’s the hardest part,” Shane said, since physicians aren’t able to answer many of their questions about Silas’ future.
Karen agreed. She knows when her daughter will reach certain milestones, whether it’s learning how to ride a bike or drive a car, but she has no such reassurance with Silas.
Even so, the family agrees they wouldn’t change a thing about him.
“He’s so great and so cute and so awesome,” Karen said. “I think a lot of people with special needs kids understand.”
Silas is the third child in the blended family. Before his diagnosis, both parents worked and the kids were in day care, but now Karen stays home to care for Silas and works some weekends at Super America when Shane is able to be at home with the children.
“Since his diagnosis, he’s never been with anyone except family,” said Shane, who works at Borntrager Auto Body and Towing in Trimont.
Money is tight for the young couple, but state health insurance pays for much of Silas’ medical expenses. His trips to and from Rochester are covered, including gas money and meals. The state also provides physical, occupational and speech therapies, and pays for the one medication Silas takes each day. It cost $3,500 per month before the dosage was recently doubled.
“When we first found out, we didn’t have a clue how we’d do it,” said Shane.
“Then you figure it out, and it becomes part of your life,” Karen said.
The family lives modestly. They drive an old van and their home is humble. To buy the iPad for Silas, they scrimped and saved, pooling their money from birthdays and holidays to buy the expensive device. Now, they’re taking the same approach with a larger purchase for Silas – a handicap-accessible van.
Silas weighs just 26.5 pounds, but as he grows, the difficulty in transporting him from his little wheelchair into a vehicle is growing too.
“I worry in the winter about her getting him into the van,” Shane said, since Silas is not able to physically cooperate when his mother moves him.
“We’re saving now, so in a few years, we’ll be able to get a wheelchair-accessible van,” Karen said.
The couple is looking at used vehicles. They have some grant money, but it cannot be used on a vehicle that is more than three years old or has more than 75,000 miles on it.
“We’re looking at $30,000 to $40,000,” Shane said. “That’s a pretty big car loan, especially with only one of us being able to work full time.
Recently, Shane’s sister, Kelsey Borntrager, took on fundraising efforts and started a benefit fund in Silas’ name at Triumph State Bank. Donations can be mailed to the bank, at P.O. Box 329, Trimont, MN 56176.
Bracelets also are available to promote lissencephaly awareness at Super America by Interstate 90 in Fairmont, at Triumph State Bank, Borntrager Auto Body and Towing, and Ole’s Gathering Place in Trimont.