Our Family Tree
Learn about the generous donors who have established charitable funds through Stark Community Foundation.
In June 1999, Jill (Brooks) Potts experienced an unimaginable heartbreak—the kind no parent should ever endure. Her son, Joshua, a bright-eyed 10-year-old with a kind heart and strong will, passed away after complications from brain surgery to remove a rare, non-cancerous Hypothalamic Hamartoma.
Throughout his life, the devastating neurological condition tried to steal Josh’s childhood, bringing with it excruciating headaches, bouts of rage, depression and uncontrollable laughing seizures, sometimes as many as 15 to 20 a day. Yet, despite these overwhelming challenges, Josh remained brave and determined to live as normally as possible.
From the depths of her grief, Jill found a purpose. She turned her pain into a mission to keep Josh’s memory alive and spare other families from experiencing the same loss. She sought to help children like Josh live life to the fullest despite their challenges.
When local Judge Edward Elum heard Jill's vision, he connected her with Stark Community Foundation. Just a month later, Jill and Joshua’s father, Larry, established the Joshua Potts Foundation, a memorial fund dedicated to supporting research, education and assistance for those
impacted by Hypothalamic Hamartomas.
EARLY SIGNS
Jill’s pregnancy with Josh was surprisingly brief—she didn’t realize she was pregnant until she was five months along. Though the pregnancy and delivery were easy, Josh’s early years proved to be far more challenging.
“I remember Josh crying a lot as an infant,” Jill recalled. “Everyone said it was colic and that it was normal.”
As Josh grew and developed, his crying turned into laughter. Everyone thought Josh was simply a happy baby. However, Jill started noticing that his laughter was becoming increasingly odd, often occurring at inappropriate times, like during church. Little did she know, these were early signs of a Hypothalamic Hamartoma.
The turning point came in the summer of 1994 when Josh was just five. Their family was on a trip to Put-in-Bay, Ohio, when they found Josh unresponsive and unconscious. He was life-flighted to Cleveland Metro Health for emergency care.
“I remember telling my husband, ‘Something isn’t right. I can feel it,’” Jill said.
Her instincts were correct. After a series of tests, doctors detected seizure activity, and an MRI revealed a Hypothalamic Hamartoma near Josh’s optic nerve.
While a hamartoma is a non-cancerous, tumor-like growth, it has the potential to cause significant problems, like precocious puberty, cognitive impairment, rage behavior, emotional difficulties, hormone imbalances and refractory epilepsy —many of which Josh was already experiencing.
They learned that Josh’s laughter wasn’t out of pure joy; he was suffering from gelastic (laughing) seizures due to the hamartoma in his brain.
LIVING WITH HH
Hypothalamic Hamartomas are extremely rare and complex. In fact, at the time, Jill believed that only about 50 families worldwide were battling the condition.
“The doctors explained to me that Josh would slowly decline as he became older to the point where he would be a non-functioning adult,” Jill recalled. “Josh was always being poked and prodded. Through it all, he took it like a champ.”
Despite the overwhelming challenges of Josh’s condition, their family was determined to give him every opportunity to enjoy a normal childhood alongside his brothers, Lawrence and Luke.
Josh spent his days engaging in activities just like any other kid. He participated in Cub Scouts, made greeting cards for his family, jumped on the trampoline, collected baseball cards, rode his bike, helped Lawrence with his paper route, went swimming, sang his favorite songs, watched basketball and indulged in his favorite treats like ice cream, butter noodles and cheesy eggs.
“He wanted to be like everyone else,” Jill shared.
One of Jill’s proudest moments was when Josh won his first gold medal for swimming at the Special Olympics in Columbus, Ohio. “We were so happy and proud of him,” she recalled.
Josh was aware of his condition and often tried to manage his behavior, though it was usually beyond his control. After experiencing stints of rage, he would feel bad about it. During his laughing seizures, he would try to cover his mouth to muffle the sound.
“His laughing was loud,” Jill explained. “People would stare, ridicule and tease him, but they didn’t realize he was having a seizure. It hurts when people make fun of others without understanding what’s happening. This world would be a better place if we weren’t so quick to judge one another.”
TREATMENT OPTIONS
Given the rarity and complexity of Josh’s condition, combined with the location of his hamartoma, it wasn’t easy to find a surgeon willing to operate. The family tried every available treatment, along with various medications and the ketogenic diet, but nothing helped control Josh’s seizures. Often embarrassed and frustrated by his condition, Josh once told a surgeon, “I want this thing out of my head.”
As Josh’s cognitive abilities began to
decline, the family found a surgeon at Cleveland Clinic who was willing to operate. In June 1999, Josh underwent a nearly 10-hour surgery to remove the hamartoma. The doctors reported the surgery as a success, having removed 97% of the tumor.
“It was the best thing I could have prayed for,” Jill said.
Jill stayed with Josh all night in the ICU, relieved when he experienced no seizures and even woke up with an appetite—an encouraging sign. However, when she and Larry left to grab something to eat, Josh began experiencing complications from the surgery. He later passed away as a result of brain swelling.
Jill shared, “Losing him changed everyone’s life in our family. Part of me died with him that day. I’ve learned to live with losing him, but I can tell you, you never get over it.”
A LASTING TRIBUTE
Even after Josh’s passing, his kindness and selflessness continued. Josh’s organs, with the exception of his eyes, were all donated to help others in need.
Looking back on the days, weeks and months after Josh’s passing, Jill reflects that she didn’t allow herself much time to grieve. Instead, she started her mission to keep Josh’s memory alive and spare other families from enduring the same heartbreak.
Over the years, the Joshua Potts Foundation at Stark Community Foundation has supported organizations like Royal
Children’s Hospital, Baxter Fluency Group and St. Joseph’s Hospital, helping three families impacted by Hypothalamic Hamartomas. Most recently, during the 2023 International HH Awareness Month, the foundation provided research funding to Hope for Hypothalamic Hamartomas, a volunteer-based nonprofit founded by parents of children with this rare condition.
What began as a mother’s tribute to her beloved son has grown into a powerful force for change. The Joshua Potts Foundation is now a beacon of hope for those impacted by this syndrome, shining a light on the condition and offering vital support to nonprofits dedicated to helping patients and their families impacted by Hypothalamic Hamartomas.