The story of Jordyn
When my daughter Jordyn was just a year old, my husband and I began seeing signs that something might be wrong. She began having tremors in her arms, causing her to hit her face on the floor when she crawled. We had her screened with our state’s early intervention program and she qualified. She began speech, physical therapy, and occupational therapy to work on standing and walking, to try and get her to talk, and to help with her lack of eating. That same year she had an MRI done that showed white matter abnormalities. 2 months later, she was diagnosed with Alexander disease via genetic testing. We enrolled her in a new study for her disease in Philadelphia, PA and her journey was forever changed. She has numerous specialists to treat the various symptoms that arise with Alexander disease. She continues to shine despite all of her challenges. She’s the happiest kid I know with such a loud and fun personality. She continues to fight with all that she has.