Suburban dance troupe helping family whose daughters have Batten Disease

Abigail and Annabelle Beedle have been diagnosed with CLN2, a rare genetic nervous system disorder, also referred to as "Batten Disease." Their story is being told by the Glenview-based Trifecta Dance Collective. Natalie Bomke reports.

GLENVIEW, Illinois - A suburban dance troupe is helping a local family draw attention to a rare disease that has impacted both of their children.

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Several moms are spending the weekend at their children's bedside at Lurie Children's Hospital. But instead of worrying, for just 20 minutes moms had the chance to relax.

"There are different duets throughout the whole piece from beginning to end, so it was kind of that through line of the sister's different pathways and journey's through this," said Ava Wichser Foerster.

"Raising awareness for Batten Disease is so important not really because of the disease but it's all about the children that are affected," said mom Amanda Beedle.

To draw attention to the condition, the Beedle family is hosting a fun run and family picnic at the Kankakee River State Park on International Batten Awareness Day, June 10. Proceeds will go to the Batten Disease Support and Research Association. You can register on the Beedles Braving Batten Facebook page. The Trifecta Dance Collective will be performing at the event kickoff.

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The National Organization for Rare Disorders named Lurie Children's a Rare Disease Center of Excellence, making it the first hospital in Illinois to receive the designation.

"We're hoping that that can go to fund research into all the various forms of Batten disease for cures and treatments for the children that are affected," said dad Adam Beedle.

Amy Fenton Parker, Batten Disease Advocates for a Cure president, said that Batten affects about 2 to 5 live births in 100,000. She said that there are about 450 families in the United States who are known to be impacted. Sometimes diagnosis can take 7 years.

"All of the work that we try to do is to try and connect audiences to be inspired by and to connect with their communities that surround them," said dancer Krissie Odegard Geye.

"Being able to help the Beedle family and really give to them instead of receiving is the biggest thing we can do," said Wichser.