Tylar Zielinski often finds himself at the end of the line when he queues up for things. Having your last name start with a “Z” will do that.
But today will be different for the 20-year-old Sprakers resident. Today, Zielinski will be first in the hearts and minds of hundreds of people when he receives his diploma from Fonda-Fultonville High School.
The young man has long awaited the ceremony that many people, his dad included, thought he would never live to see.
Zielinski has Duchenne muscular dystrophy. The terminal disease has robbed his youthful body of its vitality and left him fragile to the point of brittleness. He can no longer care for himself and can no longer move on his own, let alone walk. He has been bedridden for the past five years, is nearly blind in one eye and has a standing “Do Not Resuscitate” order. The biggest thing on his shrunken frame is his smile, which lights up a room when he flashes it.
That he has lived as long as he has is a miracle, said his father and primary caregiver, Shawn Zielinski. The average life expectancy of a person with Duchenne muscular dystrophy is approximately 25 years.
The ailment will not stop him from attending the 1 p.m. ceremony at the high school, however. “Damn right I will be there,” he said Friday, flashing that smile.
When he accepts his diploma from high school Principal David Halloran, it will be from a gurney rolled on to the stage. Emergency medical technicians will accompany him in case he has a medical emergency. There is a possibility he could die in transit because of his fragile condition.
For Zielinski, the diploma represents normalcy. “I have been waiting for this. It is one of the things I have earned on my own,” he said. Again, the smile flashes.
Zielinski will be only the second person in his family to graduate from high school; his father was the first. He accomplished the feat with the help of home tutors and while fighting every day for survival. “I am dedicated to education. I set my goal to my dad that I would graduate,” he said.
Halloran called Zielinski an inspiration and a gem. “His body may be failing him, but his mind and wit and heart are as strong as anyone’s I have seen. That is his gift for the rest of us,” he said.
The school expects a tumultuous reaction when Zielinski receives his diploma. So his being last in line will work in his favor, as the audience will be instructed to save their applause and cheers until the end.
Tylar Zielinski shies away from such attention, Halloran said. “He does not want to steal the spotlight. He wants to be part of things and feel normal. I am not trying to bring special attention to him. He always wanted to be treated like everybody else,” he said.
Still, Halloran will present Zielinski with the Zielinski Award, which was created a few years ago in his honor. “I started giving the award several years ago after meeting Tylar. It is given to a student who has gotten through high school with poise and dignity, and that is Tylar,” he said. “He will be the third recipient. I never thought he would live this long to get his own award.”
Halloran, who has grown close to the Zielinski family, said Tylar never would have made it this far without his father’s devotion. “From my own perspective, Tylar would not be alive if he was not under the direct care of his father. There is a strong father-son bond,” he said.
Shawn Zielinski, 42, said he has devoted his life to caring for his son. He provides the care all day, every day in a neatly kept house he owns. “This is his home. I have given up everything about my life to care for him. I have not left my house for 27 straight days,” he said.
Zielinski is a former EMT and can monitor Tylar’s condition himself. “I have a maternal instinct. I can hear him breathing and moving at night, but this disease will sneak up and take him quietly,” he said. “Every day we wake up and go to bed is an honor and a blessing.”
Shawn Zielinski likes to speak bluntly about the disease, often in front of his son.
“Duchenne is the No. 1 killer of people,” he said. “It is not a joke. We went past those stages. Reality is reality.”
Tylar agrees with his father’s approach: “My dad has always been honest with me.” As a result, Tylar has grown up without an ounce of self-pity inside of him and with a positive attitude about everything.
“I cannot be bitter or angry about my future. I have to stay positive. It is my dad being there for me that has kept me strong,” he said.
Halloran said he once made a comment about the loss of vision in Tylar’s right eye, and Tylar’s response was that his left eye was plenty strong. “That is Tylar for you,” he said.
Shawn Zielinski would like help in caring for his son, but he said he cannot turn to Montgomery County. He said county authorities are trying to take his son away from him under accusations of neglect. He said the county considers not having a vehicle and refusing medical services as neglect. He added that he has never been convicted of neglect.
“We sit in fear of them trying to take my son,” he said. “The stress is tremendous.”
Tylar said his father takes great care of him.
“Me and Dad have a good life together. I am not complaining,” he said.
Halloran said authorities do not know what Shawn does with his son and they jump to quick conclusions. “The [allegations] are counterintuitive to what I have seen and witnessed about these people,” he said.
The family lives precariously on Shawn Zielinski’s social services benefits, which total approximately $13,000 annually. “After I pay the bills, I have $99 to zero for 30 days straight,” he said. “We live day to day to survive.”
The family will need help in coming months to pay for Tylar’s pain medications.
Shawn Zielinski said he would rather fight the county than deal with their rules and regulations, which he says would not improve the care his son receives from him. “You shouldn’t be penalized for wanting to take care of people at home,” he said.
Zielinski said he has saved the Medicaid medical system $300,000 by caring for his son at home and thinks a home-based model of care is far superior to putting his son in a nursing home.
Tylar said the county’s wanting to put him in a nursing home would be treating him “like I am an animal. That is child abuse.”
He said he would die if he were put into a nursing home.
“I would not be able to live. I could not withstand the lifestyle of a nursing home,” he said.
Despite his condition, Tylar is far from isolated. The family has made friends with some well-known celebrities, including Tim McGraw, and Tylar has autographed pictures and awards from several organizations. The Montgomery County Sheriff’s Office made him an honorary dispatcher for the day. The accolades fill a corner of the house.
“Dad always tries to keep me active and get people to come over. Sometimes, I have too many visitors and I don’t know what to do about it,” Tylar said, followed by a bright smile.
At some point, Zielinski said he would like to build a respite house on property a family member owns in Elizabethtown. He would call it “Thumbs Up Ranch,” and it would allow families a chance to get away for a week from the daily care of their terminally ill children.
Said Tylar, “Me and my dad want to enlighten people about what they are going to face, the chaos” in dealing with a child with a terminal illness.
In the meantime, Tylar said he is thinking about college after graduation. He also is “enjoying life and looking at the beauty of life.” For him, the beauty of life is “going out on my deck and seeing the sun set — things that people take for granted, the simple things in life,” he said with a smile.