Two weeks ago, I gave birth to another beautiful baby boy named Kylan. Our family is ecstatic about our new addition, and Kylan feels like the last piece to our puzzle. My 6-year-old son, Cayden, and 20-month-old son, Kyree, love to hold him and help do things for their baby…
family planning
A little over a year ago, I wrote a column discussing the topic of family planning. Recently, we discovered that our family will be growing by one! We have lots of planning to do before my new baby comes next January. Of course, we are happy about the news…
When my son, Cayden, was diagnosed with infantile-onset Pompe disease, I experienced a multitude of different emotions. One of the biggest things I struggled with was the guilt that came along with his diagnosis. Because Pompe is a genetic disease, I know I am part of the reason my son…
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
- Study finds milder heart issues in late-onset Pompe disease
- I’ve had to learn how to keep living in the waiting room of rare disease
- Pompe study ties high antibodies to infusion reaction risk
- Home infusions take us to as close to normal as I ever thought we’d get
- Immune changes seen in late-onset Pompe may affect treatment response