One young patient is smiling today after she received a new, adaptive playground.
Arianna Walch, 5, has Batten’s Disease, a genetic disorder of the nervous system. Batten’s disease is rare – it impacts about 40 people in the entire United States. Symptoms include vision loss, seizures, delayed learning and eventually, loss of skills, according to the National Institute of Health. Children with the disease usually have a shortened life expectancy.
Arianna’s treatment includes an 8-hour infusion of a medication called Brineura, delivered through a port in her head.
Because the disease is rare, few hospitals offer it. The nearest location is in Rochester, Minn., said Stephanie Walch, Arianna’s mother. So every other week for three months, the single mom of six children traveled seven hours to her appointment, waited eight hours for Arianna’s infusion and then traveled the seven hours home.
“This medication helps so much,” Stephanie said.
On Monday, that changed for the Walch family, as Arianna received those treatments close to home, thanks to Dr. Myra Quanrud, pediatrician, Essentia Health; and the pharmacy and emergency departments at Jamestown Regional Medical Center. JRMC is the 18th hospital in the country to offer this medication.
“We’re really proud of our pharmacy and nursing teams for accepting this new challenge,” said Trisha Jungels, chief nursing officer at JRMC. “They are the difference to this family.”
In addition to not having to travel, Arianna and her family also received a second surprise – a new playground, courtesy of the Make-A-Wish Foundation.
“When Arianna’s physician approached us about providing this service, we said ‘yes,’” said K.C. DeBoer, JRMC President & CEO. “This will allow her to have care close to home – and enjoy this playground more. We are glad we can help this kid be a kid.”
The new playground has an adaptive ramp and swing so Arianna can play with her brothers and sisters. Nill Construction even used old turf from the Bison of North Dakota State University to form the base, said Owner Tim Nill.
“I know she was happy before (this playground),” said Arianna’s sister, MiKaila Walch. “Now she’ll be so much more happy.”