making a difference

Family Using Faith, Community Support to Help in Son’s Fight With Rare Tumor

Jakey is four years old and known for his radiance, resilience, awesome haircut and warrior spirit - a spirit that is carrying him into the biggest battle.

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He gives his mama the best kisses, casts a line with his Papi and his hugs make you melt.

That's Jakey, who is four years old and known for his radiance, resilience, awesome haircut and warrior spirit - a spirit that is carrying him into the biggest battle.

It's against Diffuse Intrinsic Pontine Glioma or DIPG - a rare and aggressive brain tumor that commonly hits kids between the ages of four and 10.

The facts are hard to hear: It has a survival rate of less than one percent. If you've ever heard about faith the size of a mustard seed moving mountains - well, there's a lot of moving here.

“From that moment, we had just gotten the initial [report] he has something we’re going to do an MRI and confirm,” said his mother, Karen. “From that moment on, God made his presence known very early on.”

From being accepted to and arriving at St. Jude Children's hospital in Tennessee for treatment, to positive strides for Jakey in his fight.

“We’re still processing and mind you, Jakey is blowing bubbles with a clown,” his mom says. “That’s how relevant it is in all this. He still smiles, so who are we to be dwelling in like the big ugly part of it. We need to stay positive, we need to see the beauty in everything – even in the ugly parts.”

Thousands in South Florida and around the world are joining Jakey's army in this fight - prayers from strangers and a tribe here at home stepping in and taking over household chores.

“Most is anonymous and it’s tough because you want to thank these people,” said his father, Orlando. “You don’t think about it until something like this happens. It was like we’re here, we’re fighting with you.”

“Some people are like ‘do they connect to what the diagnosis is’ and we do completely,” Karen said. “We know the diagnosis and we know the reality of things and we don’t focus on that. I don’t focus on knowing my kid has this much days left.”

“He’s not a statistic, he’s not something to Google about. He’s mine. He’s our Jakey,” she added.

The family will leave this Saturday back to Memphis to start clinical trials on the 16th. You can help with costs by donating to the family’s GoFundMe page.

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