September 3, 2024

By: Ashley Dike, Founder of The LCC Foundation

**Chapter One: The Unseen Battle Begins**

Benjamin Scott Dike entered the world on March 24th, 2013, during an unexpected blizzard. Born at 38 weeks, his arrival was free from complications, and his parents, Ashley and Danny, marveled at the sight of their third son, nestled perfectly between his two older brothers. With his bright eyes and the softest of cries, Ben was the missing piece in their growing family.

September 2013, just a few months after Benjamin’s birth, was when their lives took an unexpected turn. Ben had his first seizure, a moment that sent chills down Ashley’s spine. Rushing to Anderson Hospital, they were told it was probably just a febrile seizure and to keep watch at home. But while removing all monitors, IV’s, etc., Ben had another seizure and a transfer to Cardinal Glennon quickly followed. The CT scan revealed something abnormal, but the doctors couldn’t yet put a name to it. An EEG followed, and after what felt like a lifetime, Ben was sent home with instructions to follow up with his pediatrician the next day.

The following day’s visit was meant to reassure, but it only deepened their concerns. Ben had another seizure. This time, Danny, in his desperation, captured it on video. They rushed to Children’s Hospital, their hearts pounding with fear. In the ER, Benjamin had yet another seizure. An MRI and blood work were quickly ordered, setting off a flurry of medical activity that would become all too familiar in the coming years.

**Chapter Two: The Long Road to Answers**

The months that followed were a whirlwind of medical tests, long nights, and anxious prayers. Ben endured multiple MRIs, a spinal tap, and a battery of blood draws. December 2014 brought a breakthrough, though it was one no parent ever wishes to hear. Genetic testing revealed a mutation in the GJC2 gene, a finding that raised more questions than answers.

Despite these challenges, Benjamin continued to grow. He met most of his milestones, though there were subtle signs that something was amiss. His fine motor skills were slightly delayed, and his speech development lagged behind that of his peers. Still, he was a bright, curious child, full of laughter and love.

Every year, the brain MRIs became a ritual. The results often brought relief, showing little to no change, but the stress and worry never fully went away. Ashley and Danny leaned heavily on their faith, their family, and their friends, finding solace in their community as they navigated the unknown.

At age four, Ben started receiving therapies at the local public school. His therapists marveled at his determination, his stubborn refusal to let anything hold him back. In addition to these public services, Ashley and Danny sought out private therapies, determined to give their son every opportunity to thrive.

**Chapter Three: A New Adventure, A New Challenge**

In 2017, a job opportunity in Switzerland offered the Dike family a fresh start. Before making the decision, they met with Ben’s neurologist. With no clear diagnosis and Ben’s clinical stability, there was no reason to believe the move would be anything but beneficial.

Their years in Switzerland were filled with both joy and trepidation. Ben continued with speech and physical therapies, and for a while, it seemed like the worst was behind them. But as the third year in Switzerland approached, Ashley noticed subtle changes. Ben’s condition was progressing. By the summer of 2020, he needed a walker to get around.

A medical review in May 2020 confirmed their fears. The disease, whatever it was, was advancing. The name Dr. Vanderver at CHOP surfaced, and they knew it was time to return to the United States.

**Chapter Four: The Diagnosis**

July 2020 marked their return home. The familiar halls of the neurology department greeted them with a mix of comfort and dread. Another MRI confirmed the progression of Ben’s condition. A referral to genetics led them back to Dr. Vanderver, who would finally put a name to what they were facing.

In April 2021, they received the diagnosis of Leukoencephalopathy

with Calcifications and Cysts (LCC), a rare and relentless neurological disorder. The news hit hard, leaving them reeling. For three days, they lived in a fog of grief, but hope returned with the mention of Dr. Fraser, a Physician-Scientist, who might offer them a way forward.

**Chapter Five: A New Purpose**

October 2021 saw the Dike family traveling to Washington, DC, to meet Dr. Fraser. The visit sparked a new sense of purpose. Determined to fight back against LCC, they began fundraising efforts, pouring their hearts into supporting research that could one day lead to a cure.

But the challenges were far from over. A new seizure struck Ben during a Botox treatment at school, a stark reminder that time was not on their side. Meanwhile, Ashley faced her own battle with cancer, the weight of her illness compounding the uncertainty of Ben’s future.

In the midst of all this, they founded The LCC Foundation, a beacon of hope for families like theirs. Through the foundation, they channeled their pain into purpose, supporting research and raising awareness for a disease that had stolen so much from them.

As they faced the unknown, Ashley, Danny, and their boys leaned on one another, their love stronger than any diagnosis. Ben, their bright, brave boy, had taught them more about resilience and courage than they ever thought possible. An example that would prove to be incredibly beneficial to his oldest brother Zac, who in July 2024 received his diagnosis of LCC. Though the road ahead is uncertain, they walk it together, hand in hand, with faith, hope, and an unbreakable bond.

To learn more, visit: LCC Home Page – The LCC Foundation