Fragile X

Julie, Ara and Leslie Bagdasarian, from left, enjoy reading and outdoor activities as a family along with son Alex (not pictured). Both Alex and Julie suffer from Fragile X syndrome, a genetic disorder. The Bagdasarian’s have committed to helping other families who are dealing with the same issues.

When both of their young children were diagnosed in 1995 with Fragile X syndrome, a genetic disorder, the news was nothing short of traumatic, Solon residents Ara and Leslie Bagdasarian recalled.

“It was extremely devastating being told your kids are not going to drive or go to college,” among other milestones, Mr. Bagdasarian, 65, said.

Their children, Julie and Alex, were just 1 and 3 years old at the time.

Also, there was very little information available about the genetic defect that results in developmental delays and cognitive impairment, the couple continued, and the Internet was not yet mainstream.

They had no other families to talk to about the disorder and research on it had just begun, they added.

“It took a while to really comprehend the diagnosis and pick ourselves off the floor,” Mr. Bagdasarian said.

What the Bagdasarians did next defines who they are as people.

They decided to work to create a better experience for other families facing similar situations and have made it their life’s mission.

The effort started small, with the Bagdasarians approaching University Hospitals of Cleveland in the late 1990s and expressing their desire to form a parent support group.

“We had to do something,” Mrs. Bagdasarian said, even if it was just meeting with others to talk or share experiences.

“It was a traumatic experience when we were delivered the message, and we wanted to help other families and give them hope, information and the ability to have a better experience,” Mr. Bagdasarian explained.

The couple went on to start the Fragile X Alliance of Ohio, a nonprofit organization that took root in 1997 and provides support for families living with Fragile X. Mrs. Bagdasarian, 60, has served as its president since the start.

The organization started out with just a handful of families, and now has near 100 on its mailing list.

“We started out trying to educate people,” Mrs. Bagdasarian explained. “We just felt like there needed to be some sharing of information because it was so new (at the time).”

While the syndrome itself has been in existence since the 1950s, the non-functioning gene in the brain was just discovered in 1991.

The Bagdasarians would bring speakers in, including doctors from out of state who were familiar with the disorder, mainly in Denver, Colorado, as well as local speech and occupational therapists.

They also worked to understand the system locally and what was available to them and other families, with Mr. Bagdasarian joining the Cuyahoga County Board of Developmental Disabilities in 2008.

“The system was daunting to navigate,” Mr. Bagdasarian said. He was appointed to the board to find out more information both for his family and for others.

“I learned a lot about the system and tried to help families,” he said.

He served for 12 years as a member and past president, reaching term limits in 2020.

The Bagdasarians were also instrumental in establishing the first Fragile X medical clinic for families in Northeast Ohio at Akron General Hospital.

In addition, Mrs. Bagdasarian sat on the board for six years of the FRAXA Research Foundation, a national non-profit dedicated to finding a cure for Fragile X. The Bagdasarians worked to raise funds for the organization for over a decade, successful in obtaining over $1 million in funding.

“The pace of medical research is fast, but never fast enough,” Mrs. Bagdasarian said. “Treatment and cure is a big difference.”

Because the disorder is linked to a protein in the brain, it is difficult to get medicines that treat the brain, she continued.

Numerous drug trials have occurred, the Bagdasarians said. “We’re encouraged, but it takes a lot of time.

“Our kids are getting older, and we can’t hold out for a cure forever, so we are having to move on with realities of having young adults with Fragile X,” she said.

Julie is 30, and while she has more verbal ability than her brother Alex, 28, she suffers from severe anxiety, the Bagdasarians said. Alex, who did not walk until he was 3, is nonverbal and experiences significant cognitive and motor delays.

“It’s a range of symptoms,” Mrs. Bagdasarian described. “Everyone is different.”

A symptom most common with Fragile X is anxiety, she said.

“Julie gets anxious for no reason,” she said.

Their children experience mental health issues such as depression, with many behaviors a result of the anxiety.

Alex is in a day program in Beachwood where he is developing work skills and the hope is to get Julie into more of the community to work and volunteer based on her abilities, they said.

“We get outside a lot and try to keep them active,” Mrs. Bagdasarian said. “We go on lots of walks.

“We are under a lot of stress, and it’s challenging,” Mrs. Bagdasarian said.

“We are hopeful for the research, but deal with the reality as they get older, and you balance the two,” Mr. Bagdasarian said.

They have to prepare their children for life on their own one day, they said, which was the impetus of Solon Community Living, a charitable organization dedicated to providing accessible, safe and sustainable housing for individuals with disabilities that the Bagdasarians began to create in 2015.

The community to be built on about 4 acres on Aurora Road near Portz Parkway includes 14 high-quality two bedroom units with a minimum of one trained staff onside 24 hours a day seven days a week and caregiver suites. The project will be in the area of the Solon Community Center, the Solon Library and Community Park among other amenities, allowing the residents easy access to them.

The Bagdasarians were the force behind Issue 19 on the ballot last year which created a new zoning classification, R-3-C Multi-Family Special needs zoning, the first ever for the city.

They hope this can not only help other families have peace of mind that their adult children will have a place to live once they are gone, but to serve as a model for other areas around the country.

“We will help families get ready for this because we have to get ready for it,” Mr. Bagdasarian said. “We are making sure the families have all the pieces they need to make this successful for others.

“What we are really trying to do is set up a process so families can be prepared to move their children,” he added. “It’s what keeps us up at night — what happens if we are not here and there is no care provided?

“Building a building is one thing, but the sustainability is the key,” he said.

The Bagdasarians find joy in seeing the relief on parents’ faces knowing they have this option.

“They are so grateful we spent four to five years to get it where it is,” he said of the project.

The Bagdasarians are both retired, Mr. Bagdasarian as an executive with BP and Mrs. Bagdasarian from a career in graphic design. Mr. Bagdasarian also serves on the board of John Carroll University, advocating for the creation of Center for Autism and Neurodevelopment as well as peer mentor internships there.

“This isn’t easy,” Mr. Bagdasarian said of the day-to-day challenges they face as a family. “We didn’t ask for this, but this is what we are given, and we have to make the best of it.”

They have managed many ups and downs and challenges in their 36 years of marriage, they said.

“We work as a team,” Mrs. Bagdasarian said. The Solon Community Living project gives them a common goal, they said.

And making a difference in people’s lives is something that drives them both, Mrs. Bagdasarian added.

“We know so many people who have kids with disabilities,” she said. “You can really make a difference, and it’s a good feeling because so much of the time you feel like you’re not in control.

“The main thing is to help the kids in the long run,” Mrs. Bagdasarian added.

“When you get the original diagnosis, you have a choice,” Mr. Bagdasarian said. “You either let it devastate you or you turn it into ‘How can I make things better?”

“Helping others is part of what you should do,” he said.

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