Category: Story Spotlight
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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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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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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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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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Story Spotlight: The Breitbarth’s
Alison is the mother of two adorable little boys, each with a rare disease. Her youngest son, Grant is such a bright spot in the pompe community. They share his story and his accomplishments with us all, instilling much needed hope. She shares their unique story with us today. “When Grant had his newborn screening…
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Story Spotlight: The Clubb Family
Stephanie Clubb is a mother from Wisconsin and a total powerhouse in my personal opinion. She is a fierce advocate and inspiring woman in general. Her family’s unique story is one that always gives me so much hope and adoration and touches specifically on one of the last posts published here discussing multiple dianoses within…
Perspectives of The Pompe World 