Helping One Little Boy Regain His Smile

We first heard about Jack in 2018 through our partner, St. Louis Children’s Hospital. His parents, Jonny and Angie Fariole, had been on a journey to figure out why their baby—and then toddler— was having seizures, sometimes as many as 100 a day.

They’d gotten a diagnosis of infantile spasms, and been told that the seizures were reflux, which is a surprisingly common misdiagnosis for infant seizures, it turns out. When an MRI showed a lesion (growth) on his right temporal lobe, doctors prescribed four different epilepsy medications, none of which worked. Jonny and Angie also received a new list of possible causes: cancer, cortical dysplasia, scar tissue from a virus, or a metabolic disease.

The not-knowing can be one of the hardest parts of having a child with an undiagnosed disease. Jack began to lose some of the skills he’d been developing, such as his initial steps toward talking and walking. Jonny and Angie finally wound up at St. Louis Children’s Hospital. Here, the opinion of the doctors was unanimous: Jack would need brain surgery to remove the growth.

Jack had the tumor removed on May 29th, 2018. The surgery was a success. The morning after, he sat up on his own and started saying, “Dada,” again.

Two weeks later, a biopsy of the mass led to a real diagnosis: Jack had been living with a ganglioglioma, a non-cancerous tumor that had caused the seizures.  

After the surgery, Jack continued to make rapid gains. He soon began walking again, and then climbing on the couch. “His motor skills really took off,” Angie says. “It was like a miracle.”

Still, the seizures had caused brain damage that resulted in significant learning delays and sensory needs. Jack also was battling the drowsiness and other side effects from two years of anti-seizure medications. “He was just zonked out and living life in slow motion,” says Angie.

The worst of it was over, but helping him relearn skills and fully use his body was still very time-consuming and expensive. The multiple extended hospital stays, missed time from work, and astronomical pharmaceutical expenses had added up. Even with help from friends, family and community, the costs for Jack’s care where overwhelming. Now they had to find more money for pricey physical and sensory therapy equipment.

Brittney Young, a social worker at St. Louis Children’s Hospital, referred them to the June Jessee Memorial Foundation. She knew that they qualified for our grant, and that there weren’t many options around to provide the relief they needed.  

Through discussions with Young, Jonny and Angie decided to use the grant for their most pressing needs at the time—therapy equipment to help Jack’s motor development and sensory distortion issues, as well as the epilepsy medication he was slowly weaning off of. Leftover money from the grant would go to dental bills, also a post-medication need that was not covered by insurance.   

For Angie and Jonny, the help of many is giving their son a future. Today, he is a smiling, happy, thriving two-year-old boy.