May 29th, 2020
A new treatment plan brought Grace to Milwaukee, but RMHC brought her so much more.
Grace has a few favorite things she’s always happy to talk about – including her love of dolls, her friends, and favorite books. When you see her big smile and hear her mom’s laugh, it’s difficult to even picture a kiddo that couldn’t get out of bed less than a year ago.
Grace was diagnosed with cyclic vomiting syndrome (CVS) at a very young age after weekly episodes of unrelenting vomiting. Episodes often lasted for up to three hours, with Grace vomiting every five minutes, unexplained by any other conditions. When Grace turned ten, her situation had truly escalated to a breaking point. She spent more time in bed than out, having bad days four or more days a week. A bad day often meant Grace could not even eat or take fluids. Looking at the extent of Grace’s decline, the opportunity to finally participate in a neurostimulator treatment program was an automatic yes.
The small neurostimulator device is attached behind Grace’s left ear. It sends an electrical impulse to acupuncture points, stimulating the vagus nerve. The vagus nerve controls the communication system between a person’s brain and body systems that are regulated unconsciously, like blood pressure and heart rate. The plan was that Grace would get the device placed on Mondays, wear it for five days, get two days off, and start the cycle again for a number of weeks. It was supposed to be easy – minimal risk or side effect compared to the medications that Grace’s body had not been able to handle. When you ask Grace and Cortney to describe what it was like, they both give a little smile. “The first four weeks were brutal.”
But through the stress of the unknown, there were moments that shone brightly. At RMHC’s Family Dinner the first night of her first device placement, Grace noticed another little girl with a neurostimulator device behind her ear. They found each other again and were fast friends bonding over matching American Girl dolls from the Magic Room. Grace’s new friend was the same age and a few weeks ahead in treatment. This opportunity for the families to share experiences gave Grace and Cortney new hope in sticking out the treatment even longer than anticipated.
“It’s very isolating to have a child with a rare disease. There’s not a lot of understanding in the world of what life with a specific rare disease looks like. Everyone has hard things – this is just our hard thing. But to encounter someone else who can say, ‘My hard thing is the same as your hard thing, and we understand what these little pieces of life are like,’ -it’s irreplaceable.”
As the family went home twelve weeks later, Grace seemed like a whole new kiddo. Over the next months, she spent only three bad days in bed. Looking forward, Cortney is conscious that Grace has set the precedent for the neurostimulator treatment. She’s one of the youngest patients to try this treatment and there is no guidebook for what happens next. But for the first time in years, they are empowered and know they aren’t walking through the unknown alone.