5-year-old North Dakota girl with rare genetic disease gets her wish
A 5-year-old Jamestown girl who is fighting Batten disease got a big surprise Tuesday, August 7, with a visit from the Make-A-Wish Foundation.
Arianna Walch and her five siblings were kept away as a playground was constructed in the backyard of their southwest Jamestown home. Arianna cannot talk but her eyes showed the excitement after discovering the swings and slides and a playhouse to play with her dolls, her mother Stephanie Walch said."It's going to be really awesome for her (having the playground) because it means we will be able to help her keep physically active," Walch said. "This way we can help her maintain where she's at and slow the progress of the disease."
There are 14 forms of Batten disease that are identified by the symptoms related to a degenerative nervous system disorder. Most forms result in the loss of speech and motor skills and lead to dementia and death, according to the Batten Disease Support and Research Association.
Arianna's wish was for a playset, Walch said. The family knows how much she loves to be outside on the swings and slides, she said.
"I'm grateful that they got something for her," said Dale Harr, Arianna's great-grandfather. "This way you don't have to take her down to the park."
The playground was equipped with a buckled seat on the swing and a crawl ramp to maximize Arianna's fun and safety, said Billi Jo Zielinski, president and CEO of Make-A-Wish North Dakota. Make-A-Wish is a nonprofit organization that grants wishes for children with critical illnesses, and Arianna's wish was processed upon referral of her pediatrician, Myra Quanrud of Essentia Health, she said.
"At Make-A-Wish it's all about the child and we try to get the child's one true wish and always try to include the immediate family in the wish experience," Zielinski said. "Just because this disease is fatal, that doesn't mean this is necessarily Arianna's last wish; it's a lasting wish."
The playground was constructed by Crown of Minnesota Inc. Nill Construction did the groundwork and installed artificial turf that was once the practice field of North Dakota State University, said Tim Nill, co-owner of Nill Construction Inc.
"It was special in helping a family and helping their child with needs, but also participating with Make-A-Wish," Nill said. "It's a great organization and we're very pleased to help out."
Make-A-Wish North Dakota has granted 48 wishes this past fiscal year, Zielinski said. That's about one wish a week and it's busier in the summer, she said.
Arianna's siblings were there to enjoy the playground with her, including Ryker, 3, Alexis, 7, Kaida, 10, Ayden, 12, Mikalia, 14, and family friend Katie Walburn, 14.
Also on hand were staff of Jamestown Regional Medical Center, where Arianna is now able to have her Brineura treatment. JRMC is one of 13 facilities nationwide able to offer the new treatment that takes eight hours of procedures and monitoring, said Trisha Jungels, chief nursing officer at JRMC.
"We went to special lengths and took training to be able to offer this medication to her," Jungels said. "The point of medication is that it slows the progression of the disease."
Until JRMC offered the treatment Arianna and her mother had to driver every other week to the Mayo Clinic in Rochester, Minn. The medication is $25,000 a dose and requires an open stent into Arianna's brain and not every hospital is will to do the procedure based on costs, she said.
There are also four other known cases of Batten disease in North Dakota, according to Walch.
Arianna has a rare condition that requires special treatment and the decision of JRMC was that if it can be done here it would be, said K.C. DeBoer, CEO of JRMC. Taking the travel burden off the family along with the work of Make-A-Wish Foundation is about letting Arianna have time to be a kid, he said.
"A kid being a kid is what it's all about," DeBoer said.