Emma Eberhart is the team manager for her fourth-grade Junior Monarchs girls basketball team, belongs to Girl Scouts, loves school and has sleepovers with her friends.
She has an outgoing personality and big smile.
“She’ll reel you in very quickly,” said her father, UNO assistant Pat Eberhart.
Emma, 10, also has Angelman Syndrome, a neuro-genetic disorder.
During Saturday’s game between UNO and North Dakota State, International Angelman Awareness Day will be recognized. Teresa Eberhart, Pat’s wife and Emma’s mom, said about 15 kids from the Midwest, ranging from age 2 to young adult, will be at the game with family members.
“We’ve arranged the day so that families can network, and to increase awareness and funding,” she said. “It’s so rare for families affected by Angelman Syndrome to really have an opportunity to talk with people who get it and can answer questions and share knowledge.”
Angelman Syndrome is estimated to affect somewhere between 1 in 10,000 to 1 in 15,000.
Its characteristics include severe intellectual and developmental disability, sleep disturbance, seizures and usually a happy demeanor that includes frequent laughter or smiling. It is caused by the deletion or inactivation of genes on the maternally inherited chromosome 15.
Because it involves chromosome 15, International Angelman Awareness Day is Feb. 15. Those interested in offering financial assistance are encouraged to donate $15, or more, through cureangelman.org.
Emma, who loves going to basketball games, attends Parkview Heights Elementary in La Vista. She doesn’t speak and has balance issues and uses a wheelchair.
“They’ve been phenomenal in helping her, adapting classes for her,” Pat Eberhart said. “She’s been in an inclusive classroom since preschool and that’s very helpful. She’s a modeler. She sees what kids do and she tries to do it, too.”
Emma uses a speech communication device that uses pictures and symbols.
“She has a lot of wonderful friends who hang close to her,” Teresa Eberhart said. “But you know when she’s in her wheelchair she would like to be able to yell, ‘Hey, what are you doing over there?’ to friends across the playground. You can see in her face she has a lot more to say.”
Teresa Eberhart said Saturday’s event for Angelman kids includes a pregame meal and postgame swimming. During the game, she said, awareness videos will be shown and a fundraising raffle will be held.
There is hope that a cure for Angelman Syndrome is around the corner, as it was cured in a mouse model in 2007. However, since the Angelman Syndrome is rare, funding and support is limited. Literature from cureangelman.org suggests that funding could produce a therapeutic within 10 years.