Meet the CEO of the Angelman Syndrome Foundation - Amanda Moore & her Family – Adam, Jackson & Baden

By Aaron Olson

When Adam and Amanda started thinking about starting a family, they didn’t consider the possibility of having to go through fertility treatment at first. But after two years of what Amanda calls “riding the fertility treadmill,” the Moores decided to change direction and adopt. After searching for well over a year, they were eventually given the opportunity to adopt twins, Jackson and Braden.

Initially, everything was fine, but as time progressed, Adam and Amanda couldn’t help but notice striking differences between Braden and Jackson’s development. Amanda went so far as to say, “[at a certain point] the only thing the two boys had in common was their birthdate and shoe size.” Then, one cold January morning, Jackson began losing consciousness for split seconds at a time. They noticed him briefly go limp while he was crawling and then again while they were holding him. As soon as they realized the split-second fainting spells weren’t something else, they immediately rushed him to the hospital. This was Jackson’s first seizure, and he would continue to have countless more over the next 12 months. After doing two overnight EEGs and a blood test, Jackson was diagnosed with Angelman syndrome (AS).

Angelman syndrome is a genetic disorder caused by a lack of function on part of chromosome 15 inherited from a person’s mother (a damaged chromosome 15 from the father is known as Prader-Willi Syndrome and has a different set of symptoms). Angelman Syndrome mainly affects the nervous system and the primary symptoms include a small head and specific facial appearance, intellectual disability, limited or no speech, developmental impairment or delay, seizures, sleep problems, and physical impairments including balance and movement problems. Children with Angelman Syndrome also display “atypical frequent laughter/smiling, atypically happy demeanor, and easily excitable personality.” The disease was previously called “happy puppet syndrome” due to many of the motor impairments causing them to move like a marionette, but the term has largely been abandoned as it is considered pejorative. AS is typically diagnosed based on symptoms and is then confirmed with an EEG and genetic testing.

For the Moore family, the diagnosis was initially devastating. Amanda remembers sobbing for the life Jackson could have had compared to the life he would end up having, and she remembers feeling grateful her husband, a nurse with Community Health Group was able to stay strong and ask the right questions. After several days of grieving, the family decided to take action. Amanda called the Angelman Syndrome Foundation hotline and asked to get involved, and within a week she was on the board. After two years, she is now the CEO.

The Moores live in Fishers. Braden and Jackson are 5 and they have a pet beagle lab mix named Stella. One of the more interesting symptoms of Angelman syndrome is an extreme interest in water and is one of the things Jackson shares with the rest of the family as they spend countless hours at the YMCA swimming pool and other aquatic venues. While the family is working toward being able to take vacations, as Jackson is unable to spend extended periods away from home, they do celebrate “Gotcha Day” on September 18 to commemorate the day the boys were officially adopted.

In sharing their story Amanda hopes to accomplish two things: The first is to provide a cautionary tale about knowing when to get off “the fertility treadmill” and pursue other alternatives as these treatments can be extremely expensive and don’t always work. The second is to bring attention to the Angelman Syndrome Foundation. More information can be found at www.angelman.org.

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