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Rare disease sufferers 'have support here in our family'

• May 17, 2019 at 4:00 PM

A group of people from across the state will gather in Norwalk on Saturday, hoping to make a difference in the lives of children battling a life-altering disease. ‬

Angelman Syndrome is a rare neuro-developmental disorder that occurs in one in about every 15,000 live births. Individuals with AS have severe to profound intellectual disabilities, lack of speech, difficulties with motor control, significant sleep issues, life-threatening seizures and can have a variety of unique behaviors.

To help bring awareness to the disease, the third annual Angelman Syndrome Foundation Walk will take place at 10 a.m. Saturday at Sofios Family Park. Registration begins at 9 a.m.

This walk is one of many throughout the United States taking place Saturday; it is the only of its kind in northern Ohio, said Cindi Jackson, who helped organize the event 

Jackson said she was initially moved to look into the walk because her family knows the impact AS can have. Her daughter, Zoey, was diagnosed with Angelman Syndrome at a year-and-a-half. Now nearly 7, the girl struggles with disease symptoms and side effects on a daily basis.

Getting her diagnosis wasn’t easy for the family.

‪”We saw delays issues … She wasn’t meeting basic milestones,” Jackson said.

‪”As families of people with Angelman, we have to be the experts because not many doctors even know. It’s amazing how many professionals don’t even know. We basically have to educate everybody we come to — doctors and schools. ‬

‪“We saw delay issues almost right away,” Jackson said. “We just kept wondering ‘What is going on?’ because she wasn’t meeting the basic milestones. I knew there was something more going on than we could see, but her pediatrician just kept saying, ‘Well, she’s just delayed; it’s OK’ and I knew that wasn’t true.”

Jackson said many families dealing with Angelman have similar stories when trying to find a diagnosis or when trying to explain the illness to family, friends or teachers. She said for the most part, “we have to be the experts.” 

Educating the community is what the group hopes to accomplish with Saturday’s event, which will also act as a fundraiser for the Angelman Syndrome Foundation. It is an organization dedicated to finding a cure for the disease and to helping families and caregivers through the different challenges associated with the illness.

“It’s also to offer that support that so many families need because so many people don’t understand,” Jackson said.

While her family has been supportive since Zoey was diagnosed, many aren’t as fortunate.

“‪You lose your friends and things change. Many families don’t understand how to support you through the process and you don’t have the support in your family ... but they have the support here in our family, in the Angelman family.”

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