Kiley Andrasco is just one of 600 people worldwide to have been diagnosed with alternating hemiplegia of childhood.
Ryan, from left, Gene, Kiley and Kelly Andrasco visited Washington, D.C., this summer, where Kiley and Ryan’s grandparents celebrated their 50th anniversary. The Andrasco family
Kiley Andrasco is one of just 600 people worldwide who have been diagnosed with alternating hemiplegia of childhood, or AHC, a disease whose enigmatic nature is largely due to its rarity. In fact, AHC wasn’t even acknowledged or recognized by the established medical community until 1971, which means that there’s been less than four decades worth of study and research.
Kiley’s parents, Gene and Kelly, went through a number of twists and turns, as well as some blind alleys, before Kiley eventually was diagnosed with AHC. Right after she was born, she began experiencing AHC episodes, which are similar in nature to epileptic seizures. Her parents consulted a neurologist when Kiley was 3 months old, and he diagnosed her as having epilepsy, a common mistake because of assorted characteristics that the two disorders share.
„It was very frustrating,“ said Kelly, „because from very early on, we had doubts about the diagnosis. When we would discuss it with Kiley’s neurologist, he was zoned in on her having epilepsy and treating the symptoms for epilepsy.
„For the first 18 months of Kiley’s life, we were giving her various epilepsy meds that weren’t addressing her symptoms, because she doesn’t have epilepsy,“ Kelly added.
Since there are only seven physicians in the entire country who are familiar enough with AHC to make a proper diagnosis, the couple’s quest to discover exactly what Kiley was afflicted with was further complicated.
Frustrated by their situation, Kelly and Gene began to research Kiley’s symptoms on the Internet. „We went through all of the various illnesses online, and AHC stuck out,“ said Kelly. Once they felt confident that they had discovered what Kiley actually was suffering from, they shared their information with Kiley’s neurologist.
Kiley’s neurologist at Children’s Hospital eventually referred the Andrascos to a neurological specialist at the Cleveland Clinic. The specialist finally confirmed their belief that she suffered from AHC. At that point, they were able to begin a proper treatment for her symptoms and find some stability after months of searching for answers.
Now 10 years old, Kiley attends a special education class at Sarah Adams Elementary, where she started her third year in August.
Kiley also attended an extended school year this summer at Spencer Loomis Elementary. “They had a lot of fun learning through hands-on crafts,” said Kelly. “It’s a great way to keep her in the routine of school and be sure she doesn’t regress in academic areas over a long summer break.”
The Andrascos’ 12-year-old son Ryan, with whom Kiley is very close, was busy playing lacrosse over the summer, and Kelly said that while the games were very exciting, Kiley spent most of the time in her pop-up tent “playing office and school.”
Kiley, Ryan and their parents also traveled to Washington, D.C., this summer with their extended family to celebrate her grandparents’ 50th anniversary. The family also did a lot of sightseeing.
“Kiley was especially excited to use her brand-new stroller and to get cupcakes from Georgetown Cupcakes,” said Kelly.
The Andrascos also visited Raleigh, N.C., for an AHC family conference. “It was great to meet a lot of other families and children and talk about the struggles we all face,” said Kelly.
The Andrascos also learned that due to the money they won in the Pepsi Refresh Project in November 2010, the Foundation was able to send 23 samples for genome sequencing that could help in finding the gene or genes that are responsible for AHC. They also were informed that research is being done at Duke University, and a proposal to do research at Vanderbilt University is in the works. Ongoing research is under way at the University of Utah.
The Pepsi Refresh Project, an ongoing program sponsored by Pepsi, grants money on a monthly basis to various foundations and organizations that champion different diseases, with $250,000 going to the top two vote-getters each month. Anyone can vote either online or by text message. Jeff Wuchich, president of the AHC Foundation, decided to try and get his organization on the ballot. His efforts were successful, and Pepsi slated AHC in November of last year.
AHC remained in the running all month, positioned mostly in second place. But toward the end of November, it slipped into third place. That’s when a groundswell of the Andrascos’ family and friends came through, helping AHC move back into second place and ultimately win the $250,000.
“We were really moved by all of the support from the community,” said Kelly. “It was very emotional.”
Kelly said that Kiley was very excited to rejoin her friends this school year at Sarah Adams, where she is in the fifth grade. “Kiley has attended Sarah Adams for the last three years with the same teacher and classroom aides, so it feels more like our home school instead of changing every year as was done in the past,” said Kelly. “She has made a lot of progress over the years and has really grown in the areas of reading, socializing and behavior. The staff is great with her and it’s fun to see all of them say ‘hi’ to her at the school functions.”
Read about the fundraiser that will be held in Lake Zurich on Sunday: Sixth annual AHC Walkathon Slated For Sunday.