Chase and his twin brother, Dylan, were born in 1999. They were healthy, happy babies until they were 18 months old when we started noticing a change in Chase. He started walking off balance, falling down, and losing control of all of his motor skills. He went from a coordinated toddler to a child who couldn’t walk, talk, or even sit up by himself. He couldn’t eat or sleep and began crying non-stop.

Chase was in and out of the emergency room and after every possible test, he was diagnosed with an inner ear infection and vertigo. We pressed on, knowing it could not be that simple, and landed at Children's Hospital of Michigan. Within 24 hours, we had our diagnosis . . . Stage 1 Neuroblastoma, one of the most common solid tumor childhood cancers, and Opsoclonus-Myoclonus Syndrome (also known as OMS), a rare autoimmune disorder where one’s immune system attacks itself thinking there is more cancer, and the brain gets caught in the crossfire.

Can you imagine what it feels like to be told your child has cancer and a rare disorder that is attacking his brain and you don’t know if he’ll be there for his next birthday or if he’ll land in a wheelchair for the rest of his life? When the doctor told me my baby had cancer, I crumbled to the floor sobbing. But my husband and I had to find the strength to pick ourselves up and go on for the sake of Chase and his healthy brother, Dylan. We had to find the answers ourselves. We observed him daily to detect the slightest changes in his speech, processing, fine and gross motor function, monitored all of his medications including dosage increases and decreases. A wrong choice can lead to a very negative effect on Chase in a matter of days, such as slower speech, cognitive skills, simple focus, slower processing, balance and motor function, some of which could end up permanently affecting him. We realized that it was our responsibility to ensure that Chase had the most normal life possible.

Treating Chase aggressively was our only hope for remission of the cancer and for neurological remission from the OMS, which can leave a child permanently brain damaged if it is not treated aggressively and quickly. Chase immediately had surgery to remove the tumor on his left adrenal gland and a permanent metaport was placed on his breastplate to receive intravenous (IV) treatments. When Chase was diagnosed, there was no FDA approved treatment protocol for OMS, which led us to search the country for a doctor who could help treat it. We found Dr. Michael Pranzatelli at the Pediatric Myoclonus Center in Springfield, Illinois, who specializes in researching and treating OMS to help parents and children beat this disorder.

If you have experienced taking a healthy child to the doctors, you know how tedious and stressful it can be to have to wait even an hour. Now we had to do our best to help Chase endure the next 6 years of ongoing hospitalizations, daily steroid shots, MRI’s, blood tests, chemotherapy treatments, surgeries, oral immunosuppressant medications, OMS relapses, and IV infusions, We did our best to keep him smiling and occupy his time. We became masters at blowing up examination gloves, which gets old quickly, and it gets very hard thinking up new ways to pass the time.

The time Chase spent waiting, along with hundreds and hundreds of other children, and the lack of research and treatment options for OMS, was our inspiration for starting the Chase Away OMS Foundation. Fortunately, children adapt fairly well to new situations and often are found smiling through these difficult times. Whether we help renovate a hospital waiting room, install flat screen televisions in a transfusion room, or distribute handheld video games, books, Lego’s, or portable DVD players, it is our wish to help brighten the boring and challenging times these children spend while in treatment.

Today

Chase is medicine free, cancer free and OMS free. He adores his best friend and twin brother, Dylan. They both enjoy ice hockey, mountain biking, basketball, skiing, catching frogs, playing outside, swimming and, of course, video games.

My husband Brendan, a detective and a member of the SWAT team, and I, a partner and senior consultant at Golden Mortgage in Bloomfield Hills, met nearly 20 years ago in college and were blessed with the birth of our twins, Dylan and Chase. As a family, we love being together whether bicycling, doing tae kwon do, fishing, swimming, exploring the woods in northern Michigan, or just being with our friends and family. Aside from the love of our family and busy careers, we have found a new joy in philanthropy by setting up this foundation. We are dedicated to making it a success and strive to have a very positive effect on families that experience the pain, frustration, fear, emotion, and struggles of having a child with chronic illnesses like cancer and OMS.

Thank you for the honor of sharing our story with you.

President and Founder