Fundraiser begins to help family prepare for man's final days

SOUTH BEND, Ind. --- A South Bend family is raising money for funeral expenses as a Clay High School graduate, who is struggling with Down syndrome and other health issues, is preparing for the end.

33-year-old Jacob Sepanek was born with Down syndrome and had atrial septal defect repair surgery (ASD) at a young age. ASD is a surgery to repair a hole in a person’s heart.

Jacob also has a tube in his trachea to assist with breathing.

On January 8, Jacob’s doctor told his mother, Karla Sepanek, to call hospice care because of machine refusal. Jacob had decided he no longer wanted to have a ventilator attached and said “No more, mom,” according to Karla Sepanek.

Doctors said Jacob’s respiratory system is failing and he had decided it was all too much.

Jacob will have the trachea tube removed on Thursday.

“The love he’s shown for me has made me who I am today,” said Robert VanDurmen, Jake’s Uncle.

Robert VanDurmen, or better known as Uncle Bobert to Jacob, has always been a role model for Jacob.

“Whew. The news now is really hitting me hard,” said VanDurmen.

Jacob said he is ready to ride his motorcycle in the clouds.

“See God someday,” said Jacob.

Jacob’s family is now hoping to raise money to cover funeral expenses to give Jacob’s mother one less thing to worry about. A number of family members, classmates and friends have expressed their support for Jacob.

“If you meet Jacob…I’d say within the first five minutes, Jacob’s your best friend,” said VanDurmen.

“And just a simple smile from him will change your whole day,” said Abby Rudnicki, who is best known as his sister.

Jacob loves to dance and he is always cracking jokes, according to family members.

“He’s the center of attention everywhere he goes,” said Rudnicki. “Always. He gets up on stage and dances like crazy.”

Family said his strength, smile and positive attitude turned him into their own real life superhero.

“I want him to be remembered as a superhero because that’s what he is,” said Rudnicki. “He’s superman and that’s how he needs to be remembered.”

Karla Sepanek wants to thank the Michiana Down Syndrome group for their work.

If you are interested in donating, you can visit the family's GoFundMe page here.