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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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Story Spotlight: The Deidesheimer Family
The Deidesheimer family brought home baby number 2 in 2019. Evelyn “Evie” was only 7 days old when her mother received the heart-wrenching call. 5 missed calls and frantic voicemails from the pediatrician’s office was only the beginning of learning their bad news: Evie was diagnosed with Pompe Disease. There was panic in their pediatrician’s…
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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…
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Your Way is OK
There is no right or wrong way to cope with receiving this diagnosis. You can be in every stage of grief in a single day or live in one stage for weeks. Maybe you skip some stages entirely. Maybe you never make it past a single one. There is no itinerary to grief. There is…
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Perspectives of The Pompe World 