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February 28, 2023 Columns by Keara Engle

Nursing issues delayed my son’s enzyme replacement infusion

Every other week, my son Cayden, who’s almost 5, receives an enzyme replacement infusion as part of his treatment for infantile-onset Pompe disease. The infusion typically takes about six hours, and although we’re used to the routine, it does make for a very long day. Cayden has…

May 11, 2021 Columns by Keara Engle

Becoming a Special Needs Mom Influenced My Future Career Choice

At the young age of 15, I stared at the two bold lines on my pregnancy test and immediately burst into tears. How would I do this alone? I was only a sophomore in high school. I had no clue how I’d finish school and take care of…

Recent Posts

  • Genetic test flags Pompe disease in expectant father with no symptoms
  • COL13A1 gene levels may link to Pompe neuromuscular dysfunction
  • Having a nurse at home over the summer has been a big help


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