Life with a seriously ill child can be challenging, but those challenges don’t have to overshadow the love and joy the child brings to their family. Just ask Sarah Streeval.
Sarah’s daughter, Bella, now 3 years old, has needed around-the-clock care since she was diagnosed with congenital cytomegalovirus (CMV) at birth. The effects of CMV have included hearing loss, neurologic impairment and a rare form of epilepsy.
Thanks to the support of Kourageous Kids (KKids), a program of Hosparus Health, the Streevals are able to find peace and relief so they can focus on creating more moments together.
Simple Moments with Family
One special moment came this fall, when Hosparus Health Green River’s KKids team helped coordinate a vacation to Gatlinburg and Dollywood for their blended family, which includes Sarah’s husband, Keith, and their four sons and another daughter, ages 9 to 16.
The trip was awesome, Sarah says. “We had a rough few months before that. In October, the doctors told us there was nothing else they could do for Bella’s seizures. She was having 100 to 200 a day, and they are just going to keep getting worse.”
After that devastating news, the trip was a welcome distraction, Sarah adds. “It allowed us to process that diagnosis as a family and really value the moments we have left.”
When Bella had a long hospital stay last year, the KKids care team helped the family get two rooms at the Ronald McDonald House so they could all be together for the first time in months. They had a pizza party and enjoyed each other’s company. Something so simple meant so much, Sarah says.
She adds that one of the biggest benefits of Kourageous Kids is knowing her family is not alone. “Special needs families often don’t fit in well with regular parent groups or mommy clubs. Our kids struggle to explain to peers what it’s like to be a special needs sibling. Kourageous Kids gave our family a place to belong.”
The Streevals look forward to attending the KKids Holiday Party each year and going on fun outings to local attractions like the zoo. “Times like those are priceless,” says Sarah.
Getting the Right Care, Fast
Sarah didn’t learn about all the services Kourageous Kids has to offer until Bella was about a year old, but now she can’t imagine facing her daughter’s illness alone.
Because Bella’s health condition is so complex, she can’t go to an on-call doctor at the ER and expect to get the right treatment. Bella needs to be seen by her neurologists and other specialists at Norton Children’s Hospital in Louisville, which is two hours away from their home in Adair County. Care coordination through Kourageous Kids makes that possible.
When the Streevals head to the hospital in the middle of the night for her seizures, they call their KKids team. And the team communicates with Bella’s specialists to ensure she gets the care she needs.
“When Bella gets sick, it’s a ‘drop and run’ situation,” Sarah says. “Kourageous Kids is always there for us.”
Making Things Normal
Having an extra layer of support brings the Streevals so much comfort and security, Sarah says. “With a medically fragile child, you don’t ever know what’s going to happen, but having Kourageous Kids with us every step of the way makes it so much easier. Even if they aren’t sure what’s happening with Bella, they always help us figure it out.”
“We are more concerned about quality of life, not quantity,” Sarah adds, so having the KKids team help navigate Bella’s care has been invaluable. “The medical field is so complex. They simplify everything and help us apply it to our lives. They truly care for our family, and it means the world to us.”
Kourageous Kids “helps make things normal for us,” adds Sarah. “I tell other families to start with Kourageous Kids. They will help you figure everything out. We couldn’t do it without them.”
We’re honored to help sweet Bella and her brave family on their journey through serious illness. If you would like to learn more about our Kourageous Kids program, click here or call 800-264-0521.