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Facing the Financial Side of Pompe Disease
A rare disease diagnosis changes so much about life. Many families will describe feeling as if their life was flipped upside down and changed forever. Aside from the fear of the health outcomes of the diagnosis itself, the other major stressor is the financial aspect of this diagnosis. It is inconceivably expensive to have a…
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A Journey to Home Infusions for Pompe Disease
One of the bright spots in a Pompe Disease diagnosis is that there is treatment. This is a weekly/biweekly infusion lasting an average of 6 hours, that replaces some of the enzyme that patients do not make enough of. This slows the disease progression down, but is not a cure. For some families, being at…
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To The Parents of a Newly Diagnosed Child
Firstly, I’m sorry for the news you’ve been given. I know that it feels like your world has come down into pieces by receiving your child’s diagnosis. Maybe you were completely caught off guard, or maybe you’ve known something wasn’t right—either way, I know this feels devastating all the same. So from the parents who…
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Since I Thought I’d Lose You
Since I thought I’d lose you, I am not the same. In both good ways, and in more complicated ways, I am changed as a parent. I am more afraid now. The fear that shook our lives has crept into every corner of my mind and takes the stage from time to time. Like I…
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Story Spotlight: Winnie the Warrior
Sometimes, a diagnosis is stumbled upon secondary to other issues. Without newborn screening, this disease is hiding away ever so subtly—undetected. For children like Windsor, it’s an acute illness that exposes the bigger picture and leads to the life saving diagnosis of a progressive rare disease like a Pompe. Windsor, lovingly known as Winnie, was…
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Perspectives of The Pompe World 