Supporting family members who suffer from an incurable chronic disease is an emotional rollercoaster, and Kenny and Sharon Sonenshine have it ridden for years. Both their son and grandson suffer from Crohn’s disease, an inflammation of the gastrointestinal tract.
“Crohn’s disease can be so emotional,” said Kenny Sonenshine, a Brookhaven resident. “When my son, Stephen, was diagnosed with Crohn’s disease as a freshman in college, it was a blow to our family. But then years later, when Stephen’s son, Dylan, was diagnosed at age seven, it hit us even harder.”
Now 13 years old, Dylan has been underweight and iron deficient because he couldn’t absorb nutrients. He was teased because he was the smallest kid in class and at camp. After trying three different medications for Crohn’s, Dylan finally found one this year that is working. His uncle, Dr. Mark Sonenshine, is an Atlanta gastroenterologist who helped find the right medication.
“Your outlook on things really begins to change when your grandson has a disease for which there is no current cure,” said Kenny. “The thought of having a CT scan is very unsettling to me as an adult; tell a seven-year-old he will need one.”
Sharon is a pediatric nurse practitioner. She has been administering immunosuppressant injections for Dylan, who has a regimen of daily supplements and vitamins but lives with chronic pain.
The Sonenshines began fundraising for the Crohn’s and Colitis Foundation to give back. On Nov. 4, they will be recognized for their work to help fund research for the cure of Crohn’s and ulcerative colitis at the 33rd annual Torch Gala.
“As years passed and Dylan started to show signs of the disease, our family didn’t realize the impact this disease would have on us. Kenny and I both took this as a challenge to help them fight this terrible disease,” Sharon said.
The Torch Gala funds research and provides education and support for patients across Georgia. To date, the Torch Gala has raised over $9.6 million to find a cure for Crohn’s disease and ulcerative colitis.
“We want to make sure that everyone has the ability to live a normal life and has the access to drugs that can cure them,” Sharon said.