Local Family Shares Story of Daughter’s Rare Medical Diagnosis
KANNAPOLIS, N.C. – She moves quickly and quietly in her kitchen, drawing medicine into syringes and crushing pills. She could probably do this in her sleep. Taylor Chapman has quickly become an expert in her daughter’s medical care. She was the first one to know something about her baby girl, Berkley, wasn’t right.
“She cried a lot, and that’s when we started to take her to the doctor, when she just wouldn’t stop crying,” Taylor explains. And then Berkley stopped eating. It’s colic, doctors said. It’s reflux. She’s a preemie. She’ll outgrow it. But Taylor’s instinct told her to keep pushing. Finally, after convincing an ER doctor to run tests, an abnormal MRI got everyone’s attention.
The diagnosis: Aicardi Goutieres syndrome, or AGS. AGS is a rare genetic disorder that causes severe mental and physical handicap. Taylor broke the news to family and friends with in a social media post in August.
Berkley eats through a feeding tube. A doctor in Philadelphia who specializes in AGS is now overseeing her treatment. “She has more good days then she does bad days at this point,” Taylor says.
Berkley is believed to be the only baby in the Charlotte area with AGS. Taylor uses social media to find support, and share updates. In real life, people with the right intentions sometimes say the wrong things, like one woman who approached Taylor at a store and, “She chatted a little bit, ‘How is she,’ and then she looked at me and said, ‘I just feel so sorry for you.’ I don’t want you to feel sorry for me. I’m blessed with this beautiful baby who I get to cuddle all the time.”
Taylor suggests saying this instead: “You’re a really good mom. You’re doing a great job. She is a beautiful baby. Look at the cute girl!”
Josh works for Hendrick Motorsports. Rick Hendrick heard about his employee’s daughter, and has stepped in to help finance the family’s medical costs. Josh says, “(I) couldn’t even thank him in the moment because it’s just so overwhelming. I about lost it.”
This Christmas will be Berkley’s first. Her parents want one thing. “The only present we want is her to smile,” Josh says. Berkley, who will be one in January, hasn’t smiled yet. It’s part of the AGS.
Taylor and Josh have also learned they are genetic carriers of AGS. With science, they’ll see that Berkley’s future siblings don’t have AGS. And with faith, they’ll see their family, whole one day, no matter what. She says, “Yes, she is my daughter. But she’s His child. And to know that I will get to see her in heaven, completely healed, makes it worth it.”
Taylor wants people to remember that everybody is struggling with something. Be kind. Josh says he hopes their story raises awareness that leads to more support, and more treatments in the future.