DuBOIS — The Danches of DuBois lost a piece of their family in August of 1999. Twenty years later, they are looking back to honor his memory, spread awareness of a rare condition and remember the impact he left on the world.

Bill and Shelley Danch had three children — Kemer, Kayla and Kyle, who would have been 35 years old this year, Bill Danch said.

Kyle was 15 years old when he was at a back-to-school-party Aug. 11, 1999. He went up on a hill, his dad said, and never came back.

Kyle’s diagnosis of IHSS – idiopathic hypertrophic subaortic stenosis, another term for hypertrophic obstructive cardiomyopathy – came about by accident when he went to have his tonsils out in 1995, Danch said, and the doctor discovered a hole in the chamber of his heart. He was then sent to the head of Cardiology at UPMC Children’s Hospital of Pittsburgh.

IHSS, a rare but most common cause of sudden cardiac arrest in young people, causes thickening of the heart muscle. Unless someone has an echocardiogram, they won’t know they have it, he said.

Following the diagnosis, Kyle was allowed to play sports for fun, Shelley Danch said, but not competitively.

He went for an electrocardiogram every six months, and seemed to be doing well, so he began going once a year, Bill Danch said. He was due for a check up he never made it to the year of his death.

The Danches were told Kyle had multiple heart attacks the day he died, his father said.

At that time, Kyle was the 132nd person to have IHSS, and the third person at UPMC Children’s to die from it, he said.

Kyle, an avid athlete, enjoyed things like playing All Stars baseball, archery hunting, soccer and cooking on the George Foreman grill, he said.

Bill and Shelley live with many great memories of Kyle, but also a lot of guilt for not researching IHSS more and getting him to more frequent appointments, they said.

They were left with a piece of Kyle, though. Kemer's son, Kadin, was born in 2001, and the Danches have raised him since he was a baby.

By raising Kadin, the Danches have been able to experience things like prom and graduation they didn’t get to with Kyle, Bill Danch said. Kadin is 18 years old now and attending Penn State DuBois.

“We were able to fill that void, and relive Kyle’s life through him,” Danch said. “There are so many similarities between the two.”

Bill Danch can recall an empty chair in Kyle’s memory at what would’ve been his graduation, and his initials on the homecoming float that year. Former students still message the Danches each year on his birthday, which is a comfort to Shelley. A tree is planted at DuBois Area Middle School in Kyle’s memory.

Kyle had no life insurance at the time, his father said, and the family received a vast amount of community donations to pay for his funeral.

One thing about grief counseling sticks in Bill’s mind, he says. Kyle lived for 15 years, two months and 11 days, and when asked if he would ever take that time back, Danch says he would never.

“He brought so much joy and happiness into our lives,” he said.

The Danchs, including their daughter, Kayla, feel it should be mandatory for students and athletes to have echocardiograms. In 2000, two Cleveland football players died two weeks apart of IHSS, he said.

Kayla and Kyle were 22 months apart, and had a very close bond, Kayla said. She named her youngest daughter Kylee Michelle, after Kyle Michael.

Kayla struggles with guilt too, she says, such as enjoying holidays without Kyle there with the family.

“His memory is going to live on through his nieces and nephew,” she said. “We see a little bit of him in each of them. We talk about him all the time, and they know who he is. We’re never going to forget who he was.”

The night Kyle died, his father can remember being at the Sykesville Fair, where he saw a shooting star.

A person never gets over the loss of a child, he says, but maybe, their story can help someone facing with the same kind of loss.

“You live one day at a time, and every day is a struggle,” he said. “There is no time limit on grieving.”

Every year on Kyle’s birthday, Bill Danch asks that he “save them a seat” where he is now.

“I love talking about Kyle,” he said. “He was so special. I try to remember him the best I can.”

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