Battlement Mesa family seeks help
To assist with medical expenses brought on by a rare disease, the family of a young boy in Battlement Mesa is asking for help in reaching a $25,000 fundraising goal.
Part of the money would help pay for a certified nursing assistant to care for James Provstgaard, 4, who was born with muscle eye brain disease, a form of muscular dystrophy.
Along with delays in developmental and intellectual abilities, the disease can cause muscle weakness and severe vision impairment, according to the National Institutes of Health Office of Rare Diseases Research.
For James, who can neither walk nor talk, the disease has stunted his developmental level to that of a child between 6 months and 1 year in age, said Amy Provstgaard, James’ mother. His only means of eating is a tube that goes into his stomach.
“He’s hardly able to do anything that a normal 4-year-old could do,” Amy said.
When the family was disqualified for Medicaid in the middle of March, Amy and her husband, Alex Provstgaard, realized they could not pay out of pocket for a certified nursing assistant to care for James. Until they paid the current bill of about $2,000 they would not receive any additional assistance, Amy said.
Since then the family has gone without the nursing assistant, forcing Amy, who goes to school three days a week in Grand Junction, to miss a couple days of class and Alex to miss several days of work. A friend stepped up to care for James on some days, but it’s unknown how long she can continue to do so, Amy said.
To help pay the bills, Amy established an online fundraising campaign on crowdrise.com. As of Tuesday, the campaign raised $1,695 of the overall $25,000 goal.
While the unpaid bills for the nursing assisstant amount to about $2,000, the family hopes to make its truck wheelchair accessible, a cost of at least $10,000, Amy said, adding that it is becoming difficult to lift James into the truck from his wheelchair.
The young boy also is involved in a clinical study at the University of Iowa, where doctors document his progress. Amy said she hopes to travel to Washington, D.C., this summer so James can participate in another clinical study through the National Institutes of Health.
The family is evaluating several options for fundraising events in the community, but nothing is concrete, Amy said.
“We’ve never done this before,” she added.
Anyone wishing to contribute to the family can do so at http://tinyurl.com/provstgaard.
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