Photo courtesy of Bacan Family

Brynlee Bacan, five, was diagnosed with Rett Syndrome when she was 18 months old.

Posted: Friday, November 1, 2019 10:59 am

Community awareness and a local familys strength By Kelly Riibe Leadercourier-times.com

Nicole Bacan, of McCook Lake, is seeing purple this month and not just because her three daughters attend Dakota Valley. October is Rett Syndrome Awareness Month and it is recognized by wearing the schools popular purple color. Raising awareness means a lot to Bacan and her husband, Brett, because their youngest daughter, Brynlee, was diagnosed with Rett Syndrome in 2016.

Its considered a neurodevelopmental disease or disorder, and it is a mutation of a gene, Bacan detailed. Its the MECP2 gene on the X chromosome. And that apparently makes a protein, and its in the brain, and it goes to all the systems, which is why all the systems are affected.

Rett Syndrome is rare and usually found in girls. Babies with Rett typically do not show signs of concern until they are six-12 months, or older, and begin to miss or lose ground with developmental milestones.

We didnt notice anything until she was almost one and not crawling yet, Bacan recalled. So we knew that there was something physically that we were missing. We talked to our doctor. We got set up with early intervention services with physical therapy coming into the home. And then the physical therapist actually was the one who had noticed that she [Brynlee] had a little bit of a head tremor when she would stand her up... and thats indicative of neurological stuff.

See full story in this weeks Dakota Dunes / North Sioux City Times.

Posted in News on Friday, November 1, 2019 10:59 am.

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Community awareness and a local family's strength - Leadercourier-times.com

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