At 46, Josh McNeal of Dothan, Alabama, has spent much of his life navigating the challenges of Tuberous Sclerosis Complex (TSC). He recently received a Paceline 20 through the National Wish List, which his father, Bruce, assembled for him. Josh has asked us to share his testimony and the story of his life, faith, and experiences. We’re pleased to share his story in his own words.
In April 1980, my pediatrician told my parents they needed to start looking for an institution for me. My parents told the doctor that would never happen and that I would have every opportunity my brothers had.
During my mother’s pregnancy, she felt a jerking inside her belly. She thought I was having hiccups. We later found out they were actually seizures.
I was born on March 20, 1980, at the old Flowers Hospital, a seemingly healthy newborn. Fifteen hours after birth, I began having seizures.
The doctors performed tests and discovered a mass on my brain. My parents prayed.
I was then sent to the Neonatal ICU at Baptist Hospital in Montgomery, Alabama. There, doctors performed more tests. My parents were terrified. My family prayed.
I was later transferred to Children’s Hospital in Birmingham, Alabama. More tests were performed, but doctors were unsure what was causing the mass. When I was 11 days old, they determined surgery was necessary to diagnose it. Family and friends prayed.
What was God’s plan for me?
Because of the unknown diagnosis, doctors started me on an experimental drug while waiting for surgery. Even with medication, my seizures continued.
Dr. Morawetz was scheduled to perform my surgery. My parents cried and prayed as I was taken into the operating room.
The surgery was completed, and then the waiting began while the lab worked to determine the cause of the mass. The experimental medication continued. The seizures continued. My parents prayed.
Days passed before a diagnosis was finally made. The experimental drug was stopped, but even with medication, my seizures continued. Dr. William Benton, my neurologist, sat down with my parents and shared the diagnosis.
What was God’s plan for me?
The diagnosis was Tuberous Sclerosis Complex (TSC), a rare genetic disease caused by a spontaneous gene mutation. TSC can cause tubers to grow in the brain and other organs. In the brain, these tubers can lead to seizures and other complications. There is no cure.
My grandfather, Papa Jones, was dying of cancer. Before he passed away, he told my parents, “Josh will be OK.”
As the years went by, my seizures continued. Many medication combinations were tried without success, and my development was delayed.
At two and a half years old, my parents took me to the Mayo Clinic in Rochester, Minnesota, to see Dr. Gomez, a world-renowned expert on Tuberous Sclerosis.
After many tests, he prescribed a medication combination that had never been tried for me before. My parents prayed. My family prayed. Friends prayed. Prayer chains were started.
The medication worked.
For the first time, my seizures were under control. At two and a half years old, I began walking and talking.
What was God’s plan for me?
At the age of eight, I began experiencing severe headaches. Tests revealed a brain tumor associated with Tuberous Sclerosis that was blocking the flow of spinal fluid and causing dangerous pressure on my brain.
Dr. Williams had me flown by jet to Children’s Hospital in Birmingham and placed under the care of neurosurgeon Dr. Rosner.
Surgery was scheduled. My parents and everyone who loved me prayed.
During the night before surgery, Dr. Rosner woke up with a different approach to reaching the tumor. He decided to go through a TSC tuber in my right frontal lobe to safely access the blockage.
The surgery was successful, but I also received a shunt that drains spinal fluid from my brain to my stomach. I still have that shunt today.
The years passed. Elementary school. Middle school. High school. My seizures remained under control.
I became very active in the youth ministry at First Baptist Church. My Sunday School teachers, RA leaders, and youth ministers all had a tremendous influence on my life.
At the age of 16, I gave my heart to God and accepted Christ as my Savior.
Maybe there was a Godly plan for my life after all.
After high school, I began volunteering at Southeast Alabama Medical Center. What started as a teenage volunteer opportunity became a lifelong commitment. Today, I have volunteered at the hospital for more than 26 years.
I love helping people. I believe I have made a positive impact on many lives over the years.
I have remained active in Sunday School and treasure the many Christian friendships I have made. I love praying with people, encouraging others, and sharing hope through Facebook.
So, what was God’s plan for me?
I believe He put me on this earth to be a witness to others—to show those who may not believe that God still performs miracles.
Today, I am not living in an institution as doctors once suggested. I can walk. I can talk. I can pray. I can share God’s Word. I can serve others. I can be a witness.
God does work miracles.
Prayer works.
I am a testament to both.
God bless, and thank you for listening.