Skip to content
Pompe Disease News logo
  • About Pompe
    What is Pompe disease?
    Types
    Symptoms
    Causes
    Diagnosis
    Treatment options
    • Lumizyme
    • Nexviazyme
    • Pombiliti + Opfolda
  • News
  • Columns
    The Pompe Community Diaries – Anthony Wu
    Powering Through Pompe — Keara Engle
    Archived columns
    • On the Road to Pompe — Dwayne Wilson
  • Living with Pompe
    Adaptive clothing
    Living with Pompe disease
    ERT and enzyme stabilizers
    The ERT process
    Your daily routine with LOPD
    Adaptive equipment
    Late-onset Pompe disease
    Dwayne’s story
    Expert voice: Safe and effective exercise
    How is Pompe disease inherited?
    Pompe disease and diet
    Reproductive options
    Support groups and resources
    LOPD and respiratory health
    Mental health
    Pompe and fatigue
    Travel and LOPD
    Exercise and physical therapy
    Science behind treatment
    ERT challenges
    Navigating school and work
    Pompe prevalence
    Pompe disease progression
    Discussing Pompe with children
  • Pompe pathways
    ERT home infusions
    Therapeutic crossroads
    Tips for caregivers
    Maximizing doctor’s appointments
    Building an LOPD care team
    Financial planning with Pompe
    Work and Pompe
    Occupational therapy
    Pompe and pain
  • FAQs
  • Advocacy partners
  • What can we help you find today?

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

  • Substrate-reducing ASOs show promise in Pompe mouse model
  • Gene, enzyme replacement improve mice’s breathing, limb strength
  • Short-distance walking speed test in Pompe disease is less demanding


Envelope icon

Subscribe to our newsletter

Get regular updates to your inbox.

Bionews, Inc.

3 W Garden St
Suite 700
Pensacola, FL 32502
Website: bionews.com
Email: [email protected]
Phone: 1-800-936-1363

  • About Us
  • Leadership
  • Our Culture
  • Editorial Policy
  • Advertising Policy
  • Corrections Policy
  • Terms of Service
  • Privacy Policy
  • Careers
  • Contact Us
Disclaimer

This site is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Copyright © 2013-2025 All rights reserved.