Ava Handley of Escondido was twelve years old when she was diagnosed with DIPG, diffuse intrinsic pontine glioma, a very rare childhood brain cancer that has no known cure.
Ava received treatment in a clinical trial at Rady Children's Hospital, which seemed promising at first.
But DIPG is so aggressive that the Handleys were able to seek further treatment and enroll Ava in another clinical trial in a hospital 400 miles from San Diego.
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Ava died in June 2022, less than two years after her diagnosis.
Ava's Mom, Becky said her daughter often wondered, "What happens when kids with cancer can't get treatment" because they can't afford travel or accommodations?
Her parents told Ava they were fortunate to have the means to travel for treatment but some families don't have the same opportunities.
"That's not fair," was Ava's response.
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In Ava's honor, Handley and her husband Kevin founded En Pointe for Ava, a nonprofit organization to raise awareness and financial support for children with life-threatening brain cancer who need to travel for treatment.
En Pointe for Ava will be holding its inaugural Golf Tournament on Saturday, Sept. 16 at Twin Oaks Golf Course in San Marcos. the event starts at 11:00 a.m. and will raise money for their effort. To learn more about the event, click here.
The Handleys are looking for sponsors for the event to assist the families who need this type of support.
Ava's older brother Charlie with whom she shared an unbreakable bond is also determined to carry on his sister's spirit of empathy and selflessness. He is a pre-med student, studying to be a doctor to find a cure for pediatric brain cancer.
With En Pointe for Ava, her parents say they want to make sure every child can get the help they need "anywhere that they need it."
learn more about the nonprofit, En Pointe for Ava, here.