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Dawn Hess-Knecht
Jul 29, 2017

Hailey's life with Alexander disease

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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.

 

New Posts
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    Jul 20

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  • Maria Kefalas
    Jul 29, 2018

    Most days, the grueling routine of caring for a child with leukodystrohy takes a toll. But then, there are organizations and people who can make this journey just a little easier by seeing the beauty of kids with leukodystrophy and welcoming families into their home. The Philadelphia Eagles (and the amazing Julie Hirshey, the director of community relations for the Eagles) have been champions for kids with leukodystrophy and the Calliope Joy Foundation from the very start. We are so proud to host our biennial gala in 2019 at Lincoln Financial Field. And, we were thrilled to learn that the Eagles were hosting our friend Kendall, who has metachromatic leukodystrophy, at this year's Eagles training camp. This photo sums up the amazingness that the Eagles make possible for families in our region. We could not be more proud to work with this incredible organization. Thanks to Cindy Williamson for sharing this photo. Yah, that's Super Bowl MVP Nick Foles with our friend Kendall and her mom Cindy and pop-pop Stanley.

Together, We are stronger

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