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When I mention that my daughter has Angelman syndrome, my next words explain what it is. At some point, I’m hoping that will change with observations like International Angelman Day, every year on Feb. 15. The day’s goal is to raise awareness about this rare neurogenetic disease, which…

When you are raising a child with Angelman syndrome, stress becomes a natural part of life. As a caregiver, I keep an open mind and remember that stress relief may come from unexpected sources. I recently began to notice that music has proven to be a constant consolation…

At some point in life, tragedy or death strikes. Sometimes, they show up as partners. That was the case this past week, as my family grieved the sudden loss of my 23-year-old niece from a car accident. Wouldn’t it be great if Angelman syndrome took a back seat while…

While many people are already starting to abandon their New Year’s resolutions, I’m just beginning to focus on my intentions for 2023. I gave up resolutions long ago. But each year, I focus on one or two loose plans that I work toward as time allows. This year, I’m…

As the parent of an Angel, change is often necessary. Recently, I decided to change the software on our 12-year-old Angel’s augmentative and alternative communication (AAC) device. The update is fresher than a new coat of paint, but I’ve already noticed the benefits. Juliana is considered nonverbal, so we…

Donations can be a huge help to families. And did you know that you can donate used medical equipment? Right before the new year, my box fills up with emails from organizations doing their final pitch for last-minute donations. Most ask for money, but donations come in all forms. Before…

“What’s the big deal about Christmas pajamas?” I once thought. But now I’m a believer in their almost mystical lure. As the parent of a child with Angelman syndrome, I’ve found that self-care is important. My 12-year-old Angel, Juliana, keeps me busy. Finding moments to refuel is crucial…

Now that I’ve figured out how to drama-proof the occasion, Christmas Day has become one of my favorite holidays to spend with my family. Easing stress during activities is getting easier as my 12-year-old Angel, Juliana, grows older. We’ve settled into a comfortable holiday routine that fits both her needs…

The holiday season is officially here. With the focus on gift-giving, I’m thinking of an ideal gift for Angelman families: participation in clinical trials or other studies. Unlike regular presents that may soon be forgotten, research participation is the gift of a lifetime. Clinical trials are the backbone of…

It’s easy to give up when plans don’t go as imagined. Quitting is a lot easier than pressing on during a challenging moment. Because I persevered through a little hiccup this past week, I got to have a once-in-a-lifetime experience with my 12-year-old Angel, Juliana. I heard an announcement on…