Just looking at 3 year-old Gavin Staab, you might not think he had a disorder. But on May 17, Gavin and his family joined hundreds for a walk to support research for a disease he has, known as Angelman Syndrome.
“This is our first walk and the support of our family and friends has been amazing because without that, it would be much more challenging than it already is,” said Gavin’s mother Julie Staab.
Angelman Syndrome is a neurogenic disorder in which the mother’s 15th chromosome doesn’t function properly, resulting in symptoms like impaired speech, problems with motor skills, developmental delays, and sometimes seizures. It’s often misdiagnosed as autism or cerebral palsy and occurs in about 1 in 15,000 births.
Aurora resident Eileen Braun started the Angelman Walk in Naperville in 1999 for her daughter Kaitlin who was diagnosed with the disease six years before at 21 months old.
“It really changes all of your hopes & dreams for your child because all of those things that you would’ve expected to happen along the way [like] my child driving a car or getting married,” said Eileen. “And it’s not that you stop having dreams, but that their dreams are a little bit different.”
What started as a grassroots effort here has grown into the Angelman Syndrome Foundation’s signature fundraiser in 30 cities across the U.S. each year, funding $6.2-million worth of research.
“It wouldn’t have happened without the diagnosis that Kaitlin had. So to be able to see the good that can come from a devastating diagnosis and to see all the people that want to come and support not only Kaitlin but all people with Angelman syndrome, it’s incredibly moving can be overwhelming at times but truly a joy to see this.”
Today, Eileen Braun is also the executive director of the Angelman Syndrome Foundation and Kaitlin is 23 years old.
As for young Gavin, his mom says he starting to produce some words, including “momma.”
“We have a lot, a lot of hope for him,” said Julie. “He has actually started saying ‘mama.’ He has started to produce sound. So he makes progress everyday so go Gavin!”
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