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June 4, 2024 Columns by Keara Engle

Celebrating my child’s milestones as he graduates kindergarten

As the school year comes to an end, my 6-year-old son, Cayden, had a kindergarten graduation ceremony. I was so glad I could attend, because Cayden was really looking forward to it. His face lit up when he saw my mother and me in the crowd. My favorite part…

March 12, 2024 Columns by Keara Engle

My son’s first lost tooth prompts reflection, celebration

A few days ago, my 6-year-old son, Cayden, woke us up with quite a surprise. We were getting everything ready for his biweekly enzyme replacement infusion, the treatment for his infantile-onset Pompe disease. When I woke up Cayden that morning to get him prepared for the day…

March 6, 2024 Columns by Keara Engle

My son blows out his birthday candles for the first time

Last week was a busy one for our family. In addition to delivering a talk about Pompe disease to my son Cayden’s kindergarten class, we also celebrated his sixth birthday. The week was filled with fun and joy as Cayden was able to celebrate another year of life.

February 13, 2024 Columns by Keara Engle

Why making kindergarten valentine bags brought me to (happy) tears

Last week, my 5-year-old son, Cayden, and I spent a few hours preparing for his Valentine’s Day celebration at school. He’s in kindergarten, so it’s the first year that we got to make Valentine’s Day cards for his class. We even took it a step further and filled goody…

November 7, 2023 Columns by Keara Engle

My son with Pompe is thrilled about his brother reaching milestones

When I found out that I was pregnant again, I was ecstatic for my 5-year-old son, Cayden, to become a big brother. However, Cayden has infantile-onset Pompe disease, and I’d be lying if I said that a part of me wasn’t nervous. Because my second child has a…

March 17, 2023 Columns by Dwayne Wilson

Milestones mean more now that I’m living with Pompe disease

Today, March 17, is the day to celebrate all things green and Irish. Look for a four-leaf clover and have some Lucky Charms for breakfast because they’re “magically delicious.” Drink some green beer and have corned beef and cabbage for dinner. Search for the pot of gold at the end…

March 7, 2023 Columns by Keara Engle

Celebrating another milestone as my son with Pompe disease turns 5

Last week, we celebrated my son Cayden’s fifth birthday. Birthdays are a big milestone for all children, but this year felt extra special for us. I never knew if I would see this day, and I’m so thankful that I did. Cayden was diagnosed with infantile-onset Pompe disease…

Recent Posts

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  • Blood test ID’s where antibodies bind to Pompe disease ERT


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