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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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10 Things We Want You to Know—From Parents of Children with Pompe Disease
1. It’s okay to ask questions We want you to. We want you to try to understand and we want to raise awareness. It’s not rude to seek correct information or ask about our child’s situation. Feel free to ask questions. 2. It’s not going anywhere There is no cure. They don’t outgrow it. It’s…
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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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Perspectives of The Pompe World 