When a person is diagnosed with a serious medical condition at any age it is devastating news for his or her friends and family. But when the parents of a four-year-old receive word that their child has an inoperable brain tumor, it’s earth shattering.
Unfortunately, that’s exactly what Farmingdale residents Erik and Cristina Bravin were told on July 21. Their daughter, Valentina, was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a tumor located in the middle of the brain stem, leaving the Bravin’s with a limited amount of treatment options to explore.
“It’s shocking,” Cristina said of the diagnosis. “There was a lot of anger and asking ‘Why us?” She added, “Nobody ever wants to hear anything negative about their child, let alone when they basically give her a death sentence.”
To help the Bravin’s with mounting medical and travel expenses, several fundraisers have been held in Valentina’s name including one at the Lynbrook VFW last November. Valentina’s aunt and uncle, Gina and Frank Orosz of Lynbrook, planned the event. It was attended by approximately 170 people and raised $26,000. There have also been fundraisers held in Valentina’s hometown of Farmingdale.
The Bravins didn’t waste any time to see what the possible routes of treatment were. “We basically went into search mode,” Cristina said. “We were researching every factor and treatment possible around the country and around the world.”
Their research led them to Houston, Texas where Valentina underwent 30 radiation treatments for six consecutive weeks at MB Anderson Cancer Center. The procedures started on Aug. 18 and ended Oct. 3.
Valentina, who turned five on New Year’s Eve, has been brave throughout her fight with DIPG according to her mom. “She’s a fighter,” Cristina said. “She doesn’t do things willingly, but when she does eventually comply with anything that doctors and nurses have to do she’s very tough.” Cristina said that the radiation treatment did shrink the tumor by 50 percent, but those results are usually temporary.
The Bravin’s were hoping Valentina would be accepted to a trial at Memorial Sloan-Kettering Cancer Center by Jan. 10, but according to Cristina the Food and Drug Administration (FDA) didn’t do them any favors.
“We were waiting for the FDA to approve this trial for several months,” Cristina said. “They finally approved it on Dec. 29 which didn’t leave much time for that cutoff date.” She said that Valentina missed the Jan. 10 cutoff by a few days because patients could not be admitted to the trial after 14 weeks since their last radiation treatment.
“It’s a life or death situation, but the FDA couldn’t care less,” she said.
After Valentina’s diagnosis, Cristina resigned from her job at Winthrop University Hospital and temporarily moved to Texas while her daughter underwent radiation treatment. Erik works in sales and has also taken a lot of time off in recent months.
Valentina, who likes ballet, ice skating and playing with Barbie dolls, will undergo an MRI on January 12 to check the status of her tumor. If the tumor is stable or has regressed, Cristina said Valentina may be considered for a new trial at the National Institutes of Health in Bethesda, MD.
Valentina’s grandfather started a foundation, Friends of Valentina, after the diagnosis. Cristina said the foundation is a medical trust fund to help cover expenses and to give Valentina special celebrations when she feels up to it.
If you would like to donate to or find out more information about Friends of Valentina, you can contact Gina at (516)384-9739 or Frank at (516)509-7862 or email@example.com.
By Brian Croce firstname.lastname@example.org