Ryder Knechtle is a happy and active 3-year old who adores his two older brothers and loves superheroes, playing in his creek, and being chased by his new puppy, Sadie Mae. In March, Ryder’s parents, Jenna and Toby, noticed that he was having vision trouble in his right eye. Due to COVID-19, the family wasn’t able to get in to the eye doctor until July 2. By then, Ryder’s vision had worsened.
When the Knechtles were finally able to get Ryder in for a vision test, the optometrist recommended an MRI, fearing something might be pushing against his optic nerve. Again, due to the pandemic, they weren’t able to get it scheduled until the end of July. Then a few weeks before his appointment, Ryder started vomiting and complaining of a bad headache. Jenna and Toby took him to their local ER, where they received the devastating news that Ryder has a brain tumor located on his brain stem.
In the middle of the night, the family was flown to Children’s Hospital of Philadelphia (CHOP) where the worst was confirmed. Ryder was diagnosed with DIPG, and the family was told he had just months to a year to live.
In complete despair, Jenna and Toby made the decision to try to hold on to as much normalcy as possible while making incredible memories for their family. A ray of hope came in late July when Jenna was connected to Tammi Carr and learned that there were some new clinical trials available to Ryder.
“Through her, I also was connected to Dr. Carl Koschmann of Michigan Medicine. Between the two of them, we have finally found a glimmer of hope for Ryder. And I truly believe they were sent to us,” said Jenna.
Ryder is currently halfway through radiation treatments at CHOP and doing well. Once radiation is completed, he will take a month break and then head to New York City for an ONC201 trial.
We’re hopeful for success since we’ve heard some kiddos are doing well on it,” said Jenna. “If he’s not doing well, then we’re going to switch to ONC201 Phase 2, which will be coming out in the winter time. We’re holding on to as much hope as we can!”