Manley Raises Awareness About Rare Jacobsen Syndrome Through Young Girl’s Story

SPRINGFIELD, Ill. – In an ongoing commitment to raise awareness about neurodiversity, state Rep. Natalie Manley, D-Joliet, is shining a light on a rare disorder, Jacobsen Syndrome, through the story of 2-year-old Bralynn Powell, of Lincoln, Ill. Bralynn may be the only person in Illinois with this syndrome.

Though Bralynn is considered profoundly disabled, she is “the embodiment of joy,” said her mother, Taylor Guy.

“She cannot tell me if she’s sick, if she’s in pain, or if she’s uncomfortable,” Taylor said. “Still, she is a tolerant, joyful, resilient kid.”

“Jacobsen Syndrome is a rare chrome disorder in which a portion of the 11th chromosome is missing. It affects about one in every 100,000 births. People who have this disorder may have heart problems, speech and language problems, specific facial characteristics, and mild to severe mental retardation, although many children with Jacobsen’s are extremely capable,” according to the nonprofit website, 11qusa.org.

Bralynn has 11 medical specialists, just for her medical diagnosis, as well as an additional five therapists. Those include neurology (brain and nervous system), cardiology (heart), genetics, hematology (blood), nephrology (kidneys), gastroenterology (digestive system), orthopaedics (musculoskeletal system), immunology (immune system), rheumatology (autoimmune diseases) and ophthalmology (vision).

Bralynn was born full term at five pounds, and remained in the Nic U for 16 days, her mom said. She had two holes in her heart, she didn’t want to eat, and her muscle tone was incredibly low. 

She frequently has back-to-back urinary tract infections, and is often hospitalized, because her immune system does not work, and antibiotics are ineffective.

“There are no soldiers in the fight within her immunity system,” Taylor said. 

While all of this can be overwhelming for any parent, Taylor says she and Bralynn’s family should not be pitied. Even though they sometimes think about all the experiences Bralynn will never have, like driving a car or getting married, they focus on the reality that “Bralynn does not care.” Taylor describes her as “very happy,” and unaware of what she may not have.

“It’s easy to forget to slow down, and just enjoy our children,” Taylor said. “Some things are just so beautifully normal.”

Taylor’s goal is to help educate others, not just about Jacobsen Syndrome, but also about every child who has special needs. 

“At the end of the day, genetics are genetics, and children each have their own diagnosis, but parents are all fighting the exact same battle,” Taylor said. 

Taylor said Bralynn will go to school one day, and will need kindness. Education helps both kids and adults understand how to act around this girl with low-set ears and wide-set eyes, and “the cutest, perfect nose,” Taylor said. 

“The biggest power we have is education,” Taylor said.

“It is for children like Bralynn, and so many others, that I’m dedicated to bringing together legislators from both sides of the aisle, in both the House and the Senate, to find legislative solutions to the barriers they face,” Rep. Manley said. 

Rep. Manley, along with state Senator Meg Loughran-Cappel, D-Shorewood, co-founded the first-of-its-kind, Illinois Legislative Neurodiversity Caucus last year. Education is one of the four cornerstones, along with support, access and resources. 

“Taylor is exactly right, that education is key,” Rep. Manley said. “All parents, regardless of their child’s individual diagnosis, are challenged with finding support, access and resources, which are at the heart of the Illinois Legislative Neurodiversity Caucus.”

The caucus is also co-chaired by Rep. Nicole La Ha, R-Lemont, and Senator Seth Lewis, R-Bartlett.