"I am genuinely the luckiest soul alive to be her mother," Taylor Guy tells PEOPLE of raising her daughter, Bralynn Powell
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NEED TO KNOW
- Illinois State Rep. Natalie Manley is working with Taylor Guy to raise awareness about Jacobsen Syndrome, a condition Guy’s 2-year-old daughter, Bralynn Powell, was diagnosed with
- Due to her complex medical needs, Powell sees 11 doctors and attends physical, occupational, feeding, speech and developmental therapy each week
- “It’s equally inspiring and heartbreaking to see someone so little, be so accustomed to pain [and] discomfort,” Guy tells PEOPLE exclusively
One devoted mother of a toddler with Jacobsen syndrome is detailing the everyday complexities of life for her daughter in an exclusive interview with PEOPLE.
The rare chromosomal disorder is caused by the “deletion of several genes at the end of the long arm of chromosome 11,” according to the Cleveland Clinic. Symptoms of Jacobsen syndrome include developmental delays, heart defects and distinctive facial features. The condition affects about one in every 100,000 births, according to the National Library of Medicine.
One of the few people diagnosed with the disorder is 2-year-old Bralynn Powell.
Her mother, Taylor Guy, exclusively tells PEOPLE that Bralynn was diagnosed when Guy was 27 weeks pregnant. A maternal-fetal medicine specialist performed an amniocentesis, which is when doctors collect fluid from the amniotic sac for testing. "This is where they found the deletion on the 11th chromosome," she explains. "I was preparing to potentially lose my baby before ever even meeting her. "
Ultimately, Bralynn was born full-term weighing 5 lbs. and with two holes in her heart. She was delivered via C-section.
Due to her diagnosis, Bralynn faces the "very serious heart condition" of Hypoplastic Left Heart Syndrome (HLHS). The congenital heart defect occurs when the "left side of the heart doesn't develop fully and is too small," and is unable to pump blood effectively, according to the Mayo Clinic.
Bralynn also has an Atrial Septal Defect (ASD) and a Ventricular Septal Defect (VSD), which Johns Hopkins Medicine describes as "a hole in the wall between the heart's two upper chambers," as well as a hole between the heart's lower chambers.
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Guy's daughter Bralynn also has a weakened immune system, so the toddler sees "multiple specialists for various diagnoses," including a neurologist, cardiologist, hematologist, geneticist, nephrologist, gastroenterologist, orthopaedist, immunologist, rheumatologist and ophthalmologist," Guy says.
To manage her conditions, Bralynn attends physical, occupational, feeding, speech and developmental therapy each week. "Between therapy and doctor visits, she usually only has one day a week 'free,'" Guy says. The 2-year-old "functions at about a 6-9 month level," she is considered "behind" in "every category of development," Guy says.
But Guy admits that Bralynn is like any toddler, and when "she's had enough" in her therapies, she'll make it known. "She just flops down on her belly and refuses to do anything else for the rest of the session," she says.
"She puts an incredible amount of effort into learning," Guy continues. She shares how it's "tremendously difficult" to watch Bralynn when "her brain knows how to do something, but can't communicate to [her] body well enough." However, Guy says her daughter says her daughter "never accepts defeat as a permanent ending."
"It's equally inspiring and heartbreaking to see someone so little, be so accustomed to pain and discomfort," she says.
However, Guy explains her daughter will "be considered 'profoundly disabled,'" and "likely never live independently."
That doesn't stop the devoted mother from advocating for her child. "I personally do not believe in placing a ceiling on her capabilities," Guy tells PEOPLE. "I will continue to support her as long as she is determined to push forward."
Despite this, Guy says her "incredibly intelligent" daughter is "without a doubt, the happiest human I have ever known."
"She faces life with this untamed, unquivering sense of joy," the proud mother says. "I am genuinely the luckiest soul alive to be her mother."
With that in mind, Guy and Manley want to educate people about children with disabilities, including those with Jacobsen syndrome. Guy tells PEOPLE that "education isn't just important, it's a non-negotiable."
She explains that when she learned of the diagnosis, doctors told her several times that "there just isn't much information out there." But Guy persisted and "became so engrossed with knowledge from studies, parents, even adults with Jacobsen Syndrome themselves," so that when she gave birth, she could "effectively advocate for [Bralynn] without intimidation or second-guessing."
"This is bigger than just myself, my daughter, and my family. Anybody could be sitting in my spot with their own diagnosis. And bottom line, education prepares you for the unimaginable, the emergencies, the things you never hope happen," she says. "It also prepares you for the everyday."
She notes that working to bring awareness to Jacobsen syndrome and other disabilities is important because it can help "bring understanding to the forefront," and "allow these walking miracles a safer and more inclusive life."
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Guy adds that she's been "thrilled" to work with Rep. Manley and her team to build a community that not only accommodates neurodivergent people but embraces them with open hearts. Manley and Illinois State Sen. Meg Loughran-Cappel co-founded the Illinois Legislative Neurodiversity Caucus in 2025, highlighting education, support, access and resources as the four cornerstones.
"There are hundreds of thousands of people out there currently battling the everyday hardships of having a disabled child, being disabled or [being a] disabled adult," Guy adds. "I grieved the life I had planned for my daughter, before I met her."
She says that she has learned to navigate the "unimaginable joy" and "crippling grief" that comes with this journey. "Some days are more joy than grief and vice versa, but always both, all the time," Guy tells PEOPLE.
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Guy candidly shares that she finds moments to mourn, and finds herself crying "in the shower, the parking lot, [her] back porch, [at her] parents' house, and even in the grocery store parking lot. "I give myself enough grace to feel it and allow it to consume me, just for a moment. It is hard, maybe even impossible, but I promise you, the pain and grief may never leave you, but it will manifest into easier, more manageable emotions."
"It will change you… permanently, but not necessarily for the worse. In my experience, I've become a stronger, more compassionate, more patient human than I ever thought possible," she says.
Guy tells those in similar situations: "Hang in there, and know, you're never alone. We are right here, ready to hear your story and share in your sadness and joy in equal measure."
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