DARIEN, Ill. -- In September of 2016, Joey Ventimiglia, who was 6 at the time, was diagnosed with DIPG.
DIPG, Diffuse Intrinsic Pontine Glioma, is a brain tumor that rests in the pons of the brain. This area controls essential bodily functions such as the heartbeat, breathing, eyesight, and balance.
"What's difficult about this tumor is where it sits in the brain stem," Joe Ventimiglia, Joey's dad, said. "It's such a sensitive area that you cannot go out there and do surgery on it."
There is no cure for DIPG, and it is aggressive. The median survival time is just nine months from the time of diagnosis.
When Joey was diagnosed, there were five other kids with DIPG in Illinois.
According to Joey's GoFundMe page, all of the other children have passed since his diagnosis.
After his first MRI, the tumor was stable and shrinking. All looked well, until three weeks ago.
Joey, now 7-years-old, showed signs of a setback when he wasn't running as fast as he used to, and when he wasn't able to hit a baseball as hard. The latter was the hardest realization for this huge Cubs fan.
On Tuesday, June 27, the family learned that his tumor was in a progressive state, growing 20 percent since his previous MRI.
Now, the Ventimiglia family is holding their hopes on experimental treatments from a doctor in Monterey, Mexico.
"They go in through the groin and then through the back with catheters, and inject a certain sequence of drugs to the brain stem at that point," Joe Ventimiglia said. "They then combine this with an immune treatment."
This treatment, however, comes at a price.
"Each time it's roughly $30,000," Joe Ventimiglia said.
The family just took their first trip to Mexico for treatment. Each trip is approximately a week long, none of it is covered by insurance.
They would have to make a minimum of 10 trips for the treatment.
The community has rallied around the Ventimiglias, raising money any way they can.
A GoFundMe page was launched to reach more people. More than $101,000 has been raised so far.
The family says they're focusing every moment on their son's life.
"I've never felt that Joey's purpose has been to be the face for this specific disease. We do hope he can be an example of our faith and our belief in all things good, " Carolynn said. "Hug your kids tight. Things can change pretty quickly."