All milestones that children reach are important. However, when my son, Cayden, reaches a milestone, it excites me in ways I can’t even explain. When Cayden was diagnosed with infantile-onset Pompe disease at the age of 1 month, I had no clue what to expect. It didn’t help…
parenting
One of the hardest things about being a special needs parent is all of the unknowns. Not knowing what tomorrow will look like makes planning things a bit difficult. I am someone who likes to have plans set in stone. However, I’ve had to adjust,…
Recent Posts
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- Immune changes seen in late-onset Pompe may affect treatment response
- Some decisions don’t feel like choices in our Pompe disease journey
- LOPD patients face long delays in diagnosis, gaps in healthcare: Survey
- The joy of unexpected connections with other families who ‘get it’