Benefit for family battling rare condition for mom, two kids

Clara Highbaugh, 33, and her children, Victoria, 10, and Vince, 6, suffer from a rare condition, Chiari malformation. It’s a disorder in which a portion of the brain, the cerebellum, bulges through a normal opening in the skull. This puts pressure on parts of the brain and spinal cord and an cause mild to severe symptoms.
Highbaugh has suffered with symptoms the condition such as migraine headaches and vomiting, since she was approximately five years old. However, it wasn’t immediately diagnosed. Therefore, treatment was delayed.
“They diagnosed me with a different condition around first grade,” Highbaugh said. “They were focusing more on the migraines I’d get, and the nausea and vomiting, and so it wasn’t immediately diagnosed and treated.”
Though Chiari malformation is believed to be inherited, it’s not clear whether the condition itself is passed down, or if the structural integrity of the skull, that may lead to the malformation, is inherited.
There is no cure for the Chiari malformation, but surgery may keep the disorder under control, allowing the victim to lead a relatively normal life. Highbaugh has had two operations.
“They removed a chunk of my skull and removed one of the vertebrae,” she said. “It’s to make more room for the brain and allow for the flow of cerebrospinal fluid.”
When Highbaugh’s children both began showing symptoms, she knew what was happening, and both were diagnosed early. On June 19, Victoria and Vince will undergo surgery to correct the malformation.
“Vince’s flow isn’t too bad, but Victoria’s is almost completely blocked,” Highbaugh said. “Hopefully, we caught this early enough and surgery will keep it under control for – hopefully – the rest of their lives.”
Meanwhile, between missing work for doctor’s appointments, tests and treatment, as well as paying insurance deductibles and co-pays, the situation is taking a serious toll on the family’s finances.
“The co-pay for an MRI, and we need to get so many, is a thousand dollars,” Highbaugh said. “It needs to be done on top of everything else that needs to be done.”
Fundraiser
The local communities are rallying together to support the Highbaugh family of Wilmington, as hey face the challenges. With three members of the family affected, expenses are significant, and though the family has medical insurance, co-pays are prohibitive.
To alleviate the financial strain, a fundraising event will be held on Saturday, May 11 at the VFW in Wilmington, IL (557 W Baltimore St., Wilmington). The event will feature food, activities including raffles, 50/50 drawing, prize squares, and a silent auction.
Among the highlighted prizes generously donated are:
• A five-night stay in a beautiful resort condominium in Fort Meyers, Florida, donated by Brady Wilkins.
• A bottle of Pappy Van Winkle 15-year-old bourbon whiskey, donated by Kevin Hammond.
• Four tickets with a parking pass to a Chicago Cubs game in section 129, Row 9 donated by Homewood Disposal.
• A four-piece outdoor patio furniture set, donated by Homer and Anna Talley.
• A retro chest cooler, donated by Lori Bonarek Realty.
• A cooler of pork donated by Kestel Farm.
Additionally, there are a variety of baskets, including bourbon and wine Baskets, Tastefully Simple Baskets, Hickory Farms Gift Basket, Mary Kay, and so much more!
For those unable to attend the event, contributions can be made via Zelle to Clara Highbaugh’s phone number (815) 585-2221 or Venmo: @Clara-TuskeyHighbaugh.
"We invite everyone to join us in supporting the Highbaugh family during this challenging time," event organizers said. "Together, we can make a difference in their journey towards recovery."
For more information or to make a donation, please contact Theresa Hammond 815-955-6160, or email: th26666@gmail.com.