Amanda’s parents, Jason and Diane, didn’t know if it would be different for her. Two years prior to Amanda’s birth in 2006, her brother, Jared, was born with a rare condition that, following a plethora of tests, had yet to be diagnosed, and wouldn’t be for another 11 years.
It began for Jared with a lazy eye, which opened the door to a referral to an ophthalmologist. But further tests revealed stunted head growth and abnormalities in the brain, yet the family still had no explanation as to what it was. Then Amanda came along, and based on some signs in utero, it was thought she would experience similar developmental irregularities, an inclination that turned out to be true.
Finally, in 2015, after genetic testing brought the family to Gundersen Health System, they got the answer they were looking for: FoxG1 Syndrome. The brother and sister are two of the roughly 1,000 known cases worldwide. The siblings experienced many of the same physical and cognitive challenges, including learning communication skills and seizures. Sadly, Jared passed away in early 2021.
Now, Amanda fights on not only for herself, but for her brother, and because of that, she is our Hero.
The Amanda's family’s journey has been a long one, and Children’s Miracle Network Hospitals has been there to help. Whether it’s securing Amanda an iPad that she uses for therapy or enjoyment, or gas cards for specialty trips to Gillette Children’s Hospital in St. Paul, those small gestures made a difficult journey just a bit easier.
“These things reduce anxiety and stress for the entire family during difficult times,” says Diane, Amanda’s mother. “This is a big help for parents who struggle to provide these items that their children need to enhance their quality of life.”
Today, the 16-year-old high school junior participates in adaptive bowling and is a member of Darby’s Dancers. She loves music and movies. Her smile lights up a room. She’s our Hero.