Four-year-old Griffin Hernandez is sometimes barely recognizable to his parents these days.
Sick with an autoimmune condition that causes his brain to swell, the Bohemia boy is suffering with life-changing symptoms. The condition essentially is robbing the child of his essence.
“We miss seeing him as his happy, joyful, sweet self,” said Griffin’s mom Christine, founder of Sayville Patchogue Moms community news website. “We can go days — or weeks — without hearing him laugh.”
For six months, PANS/PANDAS (Pediatric Acute-Onset Neuropsychiatric Syndrome and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) have chipped away at Griffin’s psyche, while wreaking havoc on the hearts and minds of his mother and father.
Amid the coronavirus pandemic, the Hernandezes have struggled to find quality care for an illness that is poorly understood and often misdiagnosed. Many doctors have only met with Griffin virtually, his mother said.
“How can you diagnose a child over Zoom?” Christine Hernandez asked. “We will be on Zoom meetings with doctors, and they start to freeze or break-up, and we can barely hear them.”
During one of those telehealth appointments, the family was on Zoom with one doctor who was basically serving as a middle man, relaying information from Griffin and his parents to a doctor Griffin was supposed to be seeing, via speakerphone.
“It was a joke,” Christine Hernandez said.
Hernandez and her husband say they are desperate to find a doctor and a treatment to put Griffin on a path to returning to his true self.
“As a parent, you want to do everything you can for your children and get them the best care possible,” she said. “Sometimes this means paying privately for doctors or treatments your insurance won’t cover, and this is a huge financial burden for families.”
‘Fight’ shirt fundraiser
The couple has turned to fundraising, selling “Fight” sweatshirts to help offset their mounting medical bills and to bring awareness to a condition many people have never heard of.
“We hope to bring awareness to the fact that PANS/PANDAS is a lonely and truly isolating path to navigate, but that there is hope and you will get your child back,” Christine Hernandez said.
“You just have to fight. We really want to get our story out there because we know we are not the only family who has struggled through this.”
“It has been terrifying for us as parents to watch our child decompensate,” Christine Hernandez said. “Sometimes, he is barely recognizable to us, but then we see glimpses of who he once was, and we know he is still in there.
“I always look for the bright spots in everything, and maybe our family was meant to go through this to help others,” she continued. “By spreading awareness and sharing our story, I hope we can help other families in our position feel less alone.”
Christine Hernandez wants other parents whose children are dealing with PANS/PANDAS or who suspect their child may have PANS/PANDAS to email her for support at email@example.com.
More about PANS/PANDAS
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) occurs when an infection, virus, vaccine or other environmental trigger creates a misdirected immune response and results in inflammation on a child’s brain.
In turn, the child quickly begins to exhibit life changing symptoms, such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities and restrictive eating.