Family of Lakewood toddler with brain tumor desperate for unapproved drug

LAKEWOOD, Colo. -- Elijah Gonzalez can only eat through a feeding tube. The 22-month old toddler can no longer walk because of an aggressive brain tumor.

"The only drug that could really help him save his live is called tazemetostat manufactured by Epizyme," said Elijah's father Cesar Gonzalez.

Yet the 41-year old Lakewood dad said the Massachusetts-based pharmaceutical company Epizyme has not been willing to make its experimental drug

Credit: Melissa Kroll Photography

available to his son for reasons neither he or his wife Lee Gonzalez understand.

"It's life and death with our son and right now we're looking at death," said Elijah's mom Lee Gonzalez, 42.

The parents assumed having a recommendation from doctors at Children's Hospital Colorado, the Food and Drug  Administration and the passage of the "right-to-try" act signed by  President Donald Trump in May of this year would help their cause.

"Elijah is the poster child for the right-to-try act. If you look at the exact language, he meets all of the criteria," said Lee, who points out the federal measure allows terminally ill patients to try drugs not yet approved by the FDA.

"It's heartbreaking and you feel so powerless to say, 'How can this drug be right there on the shelf, in a lab available for other people at the moment, but not for my son?" asked Cesar.

In a statement to the Problem Solvers, Epizyme suggested it prefers to administer its unapproved drugs through clinical trials, but added, "In this case, Epizyme's Chief Medical Officer has reached out to the patient`s oncologist and had a positive discussion with the patient's family, and we are working together on an option to provide access to tazemetostat."

Credit: Melissa Kroll Photography

Elijah's mother said it can't happen soon enough.

"We've been given anywhere from two weeks to three months. However, the condition he's in, the oncologist said we'd be lucky if he lives until Christmas," said Lee. "A ray of hope sure would be wonderful."

Doctors at Children's Hospital expedited paperwork Friday afternoon to Epizyme with the hope Elijah would have been able to take his first dose of tazemetostat sometime Saturday.

While Elijah did not receive the medication over the weekend, his mother told reporter Rob Low Sunday that the drug was expected to arrive between 6 a.m. and 8 a.m. Monday.

Around 8 p.m. Monday, Lee told Low that Elijah had just received his first dose of the medication and was going home with a week's supply.

Notice: you are using an outdated browser. Microsoft does not recommend using IE as your default browser. Some features on this website, like video and images, might not work properly. For the best experience, please upgrade your browser.