Strength in faith: Rochester Hills teen, 15, overcomes rare immune system disorderDec 22, 2021
Under a gray winter sky, a bell rang clearly — even above the blaring honks of a passing car parade and chorus of cheers.
Benjamin Ross, 15, let go of the bell's rope with a megawatt grin plastered from ear to ear. Surrounding him Tuesday outside Children's Hospital of Michigan in Detroit were close family members and the health care professionals who brought him to this milestone: Officially free and clear of an incredibly rare disorder impacting his immune system.
"It's been a long process, but I'm glad it's over," Benjamin said to the small crowd standing in front of the hospital and the car parade encircling the driveway for the bell-ringing ceremony.
A long road to answers
In June 2019, Benjamin's parents first noticed his balance was off, and he was fatigued and dizzy. This began a 16-month journey to uncover a diagnosis that included multiple tests and scans and consultations with doctors across the country.
"He was a puzzle; they did every test possible," Benjamin's mother, Robin Ross, of Rochester Hills, said, adding that his symptoms were not traditionally associated with his condition. "We believe in the power of prayer and we believe in medicine."
Eventually, doctors diagnosed Benjamin with central nervous system hemophagocytic lymphohistiocytosis, also known as CNS-HLH, a rare condition in which the immune system no longer functions properly. It is diagnosed in fewer than 1 out of every 50,000–100,000 children per year, according to St. Jude's Children's Research Hospital.
The diagnosis paved a path to treatment: Benjamin underwent a bone marrow transplant last February, and has been on the road to recovery since.
Throughout nearly two years of treatments, including rounds of chemotherapy, Benjamin gained strength in his faith. The high school freshman is wise beyond his years. Thoughtful in his words, Benjamin speaks with a surety uncommon in teens.
"It was kind of overwhelming at first, and eventually I started to accept the fact that I'm sick and I got to just deal with it," Benjamin said, recalling the early days of navigating his symptoms.
Every night he sleeps with a cross in his hand and prays, oftentimes for protection from physical harm and evil energy.
"(The cross) is sort of a physical and mental reminder," he said. "In my mind it's like, 'You've been through like you've gotten through this, you're strong, you can continue,'
"It's basically telling me I'm OK."
His strength became a beacon of hope for other patients at the hospital and radiated a force of positivity that gained him fast friends in hospital staff and patients.
"He's been a source of strength for us," Robin Ross said through tears. "He's a very positive person. We didn't really need to have conversations with him about staying strong and thinking positive, because it's just his personality."
Benjamin's clean bill of health comes just days before Christmas — a divine sign, his family says, that has strengthened their hope. This Christmas, they'll bask in Benjamin's health and enjoy their first "normal" holiday in years, his mother said.
Also along the family's horizon is a vacation somewhere warm, maybe Mexico, and Benjamin would love to see a concert by one of his favorite artists, Andy Grammer. Grammer's song, "Lease on Life," has been on repeat for Benjamin, who said he's looking forward to returning to Stoney Creek High School in Rochester Hills and trying out for the baseball team.
The chorus of the song begins with, "Everything's gonna be alright, everything's gonna be alright. Got a brand new, got a brand new, got a brand new lease on life."
For more information on histiocytosis conditions, visit the Histiocytosis Association's website.