Brain Tumor Awareness Month is coming to a close, and a South Florida family is trying to help parents, who get the heart-wrenching news that their child has been diagnosed with Diffuse Intrinsic Pontine Glioma or DIPG.
Joe DiMaggio Children's Hospital doctors told Karen Duque, it's almost impossible to spot warning signs.
A few months before his diagnosis her son, Jakey, had swelling on his neck and was checked out at the hospital. They took him back to the hospital after he had what appeared to be the same stomach bug as his classmates.
"DIPG comes, and it comes quickly. It typically is diagnosed around the age of five. Jakey got diagnosed at the age of four," says Duque.
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While DIPG typically affects young children, she says it doesn't discriminate by gender or ethnicity.
"Once it strikes, it's very aggressive, and there's really nothing that you can do." Jakey battled for 242 days before losing his fight with DIPG.
While doctors have known about this disease for decades, she believes there hasn't been real advancements in treating it because of its location in the brain, "but the ultimate reason why it's so hard to make advancements is the lack of funding."
She battled to make sure his death certificate said DIPG. "Typically they do no state childhood cancer, because if they did, then that would provoke more funding."
To help families dealing with similar diagnoses, she helped establish a support foundation in her son's name called Jakey's Army.
The organization will be able to help more people with a recent donation of $1,500 from Ygrene, which also gave $1,500 to St. Jude Children's Research Hospital.