Jeni stepanek 2023

The mother of a young boy who died from a rare neuromuscular disease is carrying on his legacy as she fights for her own life.

Jeni Stepanek is the mother of Mattie Stepanek who became well-known after appearing on "The Oprah Winfrey Show."

Mattie was a child poet and peace activist who inspired many with his words.

In 2004, he died from a rare disease related to muscular distrophy.

He was just shy of his 14th birthday. The same disease took the lives of his three siblings.

"I still cry. A mother never, ever gets used to an empty lap," Stepanek said.

Stepanek suffers from the same disease and is now battling cancer.

She said she developed a rare and life threatening complication caused by the cancer treatment.

"I'm at the point where no more bad news is good news," Stepanek said.

Stepanek said she misses her children, but accepts loss is part of life and is choosing to live the rest of her life with purpose.

Part of that purpose is crossing off her bucket list and accomplish