Five-year-old child battles inoperable brain tumor

Five-year-old Ava loves puzzles, coloring, and play-doh. Like many five-year-olds, she loves when her mother Nichole Barron paints her nails. From the outside looking in, you wouldn’t know the battle her family fights everyday, watching little Ava grow up with an inoperable tumor.

“She knows she has a boo-boo in her head. For right now, that’s been acceptable…she’s got a boo-boo in her head.” Nichole explains.

Ava was diagnosed with DIPG last August, just eight days before her 5th birthday. Nichole says the tumor is growing in the base of her brainstem, making it completely inoperable.

According to DIPGregistry.org, less than ten percent of children survive two years after being diagnosed. In Ava’s case, we’re told she has been given just another year to live, but her family remains hopeful and continues treatment like chemotherapy.

“She has a fabulous team, who really does know what they’re doing.” Says Nichole. “They are trying to do everything they absolutely can do…but there’s only so much they can do.”

While the tumor has grown since August, so has the unbelievable support for Ava. A number of fundraisers have been set up by Nichole’s friends. This includes local restaurants like Pizza King, where she used to work for before leaving to take care of Ava full-time.

There’s also been a GoFundMe account set up. Nichole says all of these fundraisers will help with the cost of traveling for treatment at Johns Hopkins every two weeks. It will also help plan for the future.

“What the proceeds are going toward…if they say what’s going to happens, so that my baby has a proper burial.” Nichole says. “That’s what it’s really going to do. I’m praying that we don’t get there, and that everything does what it’s supposed to do.”

With tough days still ahead, Nichole says she and the family are staying strong, especially Ava.

“I have to keep it together for her. If she can go through all she’s going through and go on everyday like a little trooper like nothing, you wouldn’t know anything’s happening…I can’t have a breakdown everyday.” Says Nichole.

Nichole says all five Pizza King locations in Delaware will be hosting fundraisers for Ava on May 11, with 20% of the day’s proceeds going toward the family.

Her friend, Brittney Parsons, will be hosting photo sessions on April 11. She can be reached at brittneyeparsons@yahoo.com.

The GoFundMe account for Ava can be found here.