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I Was Surprised by the Results of My Son’s Sleep Study

My 4-year-old son, Cayden, completed a sleep study in October. We’ve been waiting for his pulmonary specialist to call with the results, and we finally received them. While we didn’t get the news we were hoping for, I’m relieved that we were able to complete the study in…

I’m Thankful I Can Depend on My Family for Help

When you have a child with a rare disease, it can be difficult to find people who are both comfortable and willing to care for them. It’s been a challenge to find people I trust enough to watch my 4-year-old son, Cayden, who has infantile-onset Pompe disease. Cayden…

Why I’m Donating My Son’s Used Adaptive Equipment

Over the years, our family has become quite familiar with various types of medical and adaptive equipment. My 4-year-old son, Cayden, has used several medical and adaptive devices to help make his life with infantile-onset Pompe disease a bit easier. However, like any kid would, he eventually outgrows…