Rusty Rides Run this Saturday to benefit five-year-old from Waukon with one-in-a-million neurological disease

Ahlstrom family ... Left to right: Isaiah, Ashley, Justin and Vera Ahlstrom. Submitted photo.

The 12th Rusty Rides Run scheduled for this Saturday, April 6 will benefit Vera Ahlstrom, five-year-old daughter of Justin and Ashley Ahlstrom of Waukon. In June of 2018, at the age of six months old, Vera was diagnosed with Alternating Hemiplegia of Childhood (AHC), a rare, life-threatening neurological disease affecting approximately one in one million people.

AHC impacts Vera in a number of ways, with the most common episode being paralysis (hemiplegia) to her left or right side and her most severe episodes involving bouts of full body paralysis and severe dystonia, which is a movement disorder that causes the muscles to contract involuntarily. When working through episodes of this type, she is unable to eat or drink anything other than a small syringe of water at a time. Anything more and she could aspirate as her esophagus, larynx and trachea do not function correctly.

Vera’s disease also renders her unable to walk without assistance and her vocabulary is limited to a handful of words. Everyday tasks can be very hard to impossible for Vera due to her mental and physical disabilities.

Around half of the children with AHC develop epilepsy and, unfortunately, Vera’s condition now includes epileptic seizures. The Ahlstrom family hopes to make a trip to Duke University to see more specialists about possible ways to move forward. The family also travels to Shriners Children’s Hospital in Chicago, IL two times per year to see that facility’s main neurologist, and there are many other trips to Stead Family Children’s Hospital in Iowa City that add to the family’s expenses in seeking treatment for Vera.

Vera’s family says she is a lot like any other five-year-old little girl in that she loves to play with her dolls, color and paint, and play with her little brother, Isaiah. She loves to snuggle and loves her kitties, Bean and Norm, and she also loved her yellow Labrador Retriever, Lily girl, that passed away in January of this year.

There is currently no cure for AHC, and with the rarity of the ailment, there is no funding for treatment available other than what families raise themselves. The April 6 Rusty Rides Run will involve a full day of events focused on providing such assistance to the family.

Registration to take part in the vehicle ride - the route of which is to be determined - will take place between 10:30-11:30 a.m. at the Allamakee County Fairgrounds Pavilion in Waukon. The ride, which is deemed to be ATV/UTV friendly, in addition to featuring other passenger vehicles, will begin at 12 noon, with plans to return to the Pavilion by 5 p.m.

Upon return to the Pavilion, a free-will donation meal will be available, and a live auction is scheduled to begin between 6 and 6:30 p.m. There will also be 50-50 drawings, raffles and a silent auction as well.

Those seeking more information or who may want to help out during the day or with auction or monetary donations may contact Sarah Collins, at 563-794-0437, or Kelly Cook, at 563-568-1699. Checks can be made payable to Doug Ahlstrom. More information about the ride, Vera and AHC can also be found at the Victory for Vera Facebook page.