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Story Spotlight: Julie Garfield
In team events, there’s always a time when you think, “thank goodness that person is on my team.” That’s how I feel about a lovely woman named Julie. Her story and attitude towards Pompe is very inspiring and her efforts to spread hope are truly making waves in the community. This is her story. “I…
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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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Perspectives of The Pompe World 