Hailey presented at 9 months with classic symptoms of Infantile Alexander disease Failure to thrive, a large head , constipation and seizures were among her first symptoms. It would take our local children's hospital five years to correctly diagnose Hailey, even though her MRI at age 23 months proved immature myelin at the frontal lobes. Hailey was found to have the R79H mutation . I immediately began researching Alexander disease day and night, learning everything I could. I discovered that there was research going on all over the world. I read about the work Albee Messing was conducting in Wisconsin and contacted him regarding Hailey. Soon, the United Leukodystrophy Foundation was holding the first and thus far only Alexander disease conference near Chicago in 2008. It was an incredible experience meeting other families! We spent three days sitting in on the medical conference , absorbing all the info we could. We made life long friends with the other families ❤ This gave us hope and gave us the support we all needed.
Today Hailey is 16 years old ! The years have had many ups and downs. In 2013 Hailey was put on hospice because she was so fraile . We took her to a new doctor that recommend a strict diet of no dairy or gluten. After 9 months on the diet Hailey improved. Four years later she is a healthy 96 pounds and recent testing at Children's hospital of Philadelphia shown normal results on lung, heart and other tests ! She is now seizure free and off all medications.
You can follow Hailey's amazing story on
Facebook @Hailey's Life with Alexander disease.
