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Fumbling Through the First Year Fog
That first year is the hardest. When you Google Pompe Disease and read something along the lines of how some kids don’t live to see their first birthday, it wrecks you. I remember thinking, “I’ve only got a year?” And I swear I don’t think I exhaled for the first time until we reached that…
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Story Spotlight: A Big Sister’s Side
As I often find myself lost in worry about how and when I’ll explain Pompe Disease to my kids, it’s so refreshing to hear the perspective of an older sibling of a child with Pompe Disease. There is so much to consider such as age, maturity, and severity of disease and this often feels like…
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Why the Fuss?: Newborn Screening
What if in the midst of a parent’s worst nightmare you learn that something could have been done? The sick child you’ve brought into this world could have had treatment? Could have been helped? Could have lived? I’ve talked about it previously, but in honor of September being Newborn Screening Awareness Month, I really wanted…
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Story Spotlight: Dwayne “The Pompe Champ” Wilson
Dwayne was diagnosed with Late Onset Pompe Disease later in life. Growing up, as a child, he explains that he was not athletic and that it was chalked up to being overweight as a child. After high school, he made changes to his health and lifestyle, losing a great amount of weight and being more…
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Story Spotlight: Keara and Cayden
It is no secret that having a baby is hard. Or that having a sick baby is hard. But having a sick baby as a young, first time mom—I’m not sure there is a word for that kind of hard. Many of the parents in the Pompe community share similar demographics but one brave mother…
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Perspectives of The Pompe World 