Claire 4 Rare Meets Kelly & Kiley Andrasco

Welcome back to Claire 4 Rare! This month I am sharing the story of another
mother-daughter superhero duo. Please enjoy Kelly and Kiley’s incredible journey.
As a baby, Kiley suffered from frequent and severe seizures. Her family spent the
first two years of Kiley’s life trying to figure out what was happening to their little girl.

Kiley’s mother, Kelly, felt her baby’s seizures were more than they seemed. After Kiley’s episodes, she would experience severe paralysis. Typically, people will experience temporary paralysis after a seizure. This is known as Todd’s paralysis. However, Todd’s paralysis tends to last 15-36 hours. Kiley’s paralysis would last 5-7 days.

Kiley and her family eventually received a diagnosis of Alternating Hemiplegia of
Childhood, otherwise known as AHC. AHC is a neurological condition characterized by recurrent episodes of temporary paralysis, often affecting one side of the body. This rare disease causes developmental delays, temporary paralysis, stiffness, behavioral issues, and seizures. It is estimated to occur in approximately 1 in 1,000,000 births. However, since cases may go unrecognized or misdiagnosed, it is difficult to determine the true frequency of AHC in the general population.

In Kiley’s case, she is affected by all the above symptoms. Kiley takes a
medication not available in the United States, which does not stop her seizure attacks, but lessens their severity. Kelly expressed that Kiley struggles with accepting the disease and tends to focus on what she can’t do rather than what she can do. Kiley wishes to do “normal” things like drive a car. She talks about wanting to be a teacher, getting married, and having kids. Unfortunately, these things seem unlikely to happen for Kiley. Kelly shares, “It’s like living a life on a roller coaster going from acceptance to asking, why me?” However, Kelly always says to never give up! Kiley is a remarkable 20-year-old woman, and her smile will brighten a room. She is extremely social, and she loves to shop and go out with her friends and family. She is currently in a transition program at Lake Zurich High School, where she learns life skills and gets to work an hour a day out in the real world. This program is hugely beneficial for Kiley as it allows her to experience the working world a little bit at a time. Their eventual goal is to get Kiley working a couple days per week.

In Kelly’s research and online digging to learn as much as she could about AHC,
she somehow stumbled upon the AHC Foundation. She and her husband quickly
became involved. Today, her husband is the foundation treasurer, and she is involved in family support, fundraising, and planning their family meeting every other year. “It’s nice that we get to help other families navigate this disorder.” Presently, the AHC Foundation is helping to fund 3 projects. These projects are CRISPR Gene Editing, AAV Gene Replacement, and an extraordinary project at Northwestern University. They are developing a colony of mice with AHC and working on gene knockdown therapy to suppress ATP1A3 mutations (one of the mutations that cause AHC). Kelly and her husband are incredibly proud of these projects and hope that they will provide a brighter future for those affected by AHC.

Kelly and Kiley are an extraordinary duo who defy expectations daily. Kelly
doesn’t shy away from admitting that there are days when AHC gets in the way. They don’t let that stop them. “We don’t just stay home and close off. We still go out and do the things we were planning to do. They just might have to be adjusted a bit.”

What Does RARE mean to you?
On one hand, rare, to me, means limited resources, limited treatment options, limited knowledge, and limited awareness. On the other hand, it means being a part of a community that has the opportunity to change the world!