Anyone who knows me, or has read any of my columns, knows that I crave simplicity in my life. It’s one of the things that make it easier to manage the care of my 13-year-old, Juliana, who has Angelman syndrome. When my husband decided to take on…
I was disappointed to read the news recently about new data from a Phase 3 clinical trial of an investigational treatment for Angelman syndrome called OV101 (gaboxadol). Developed by Ovid Therapeutics, the experimental treatment did not appear to combat the complexities brought on by Angelman.
When you’re living with a neurogenetic disorder like Angelman syndrome, you quickly learn that flexibility and change are necessities. I’ve also learned that raising my 13-year-old Angel, Juliana, is a task that requires help and support from others. We lead a fairly simple and average life — or as…
What is it about being overwhelmed that can make you try to do even more? Is it the need to catch up or fix whatever is wrong? Whatever fuels this drive, I’m working to do less when I feel overwhelmed. Taking it easier is not what comes to mind when…
When you’re living with Angelman syndrome, some topics are just hard to bring up. Incontinence is one of them. But now that we have a plan to tackle this challenge with our 13-year-old Angel, Juliana, I feel more comfortable writing about it. Gastrointestinal issues are quite common…
When advocating for a child with Angelman syndrome, it’s not always easy to let up on the reins and trust the professionals. But I’ve come to rely on the expertise of my 13-year-old Angel’s medical providers and her team at school. This trust enables me to make adjustments for…
While packing up my 13-year-old Angel, Juliana, the other day, I realized how fortunate we are to have a great start to her seventh-grade year in school. Juliana has been cooperative at school, and the fussing and crying that usually ensue in the mornings have lessened dramatically. I’m not…
My 13-year-old Angel, Juliana, had an incredible return to school last week. It’s not a newsworthy event, but it is something to celebrate. Returning to school is a stressful time of year for any family. From school supplies to adjustments and new routines, there’s a lot to juggle during…
My 13-year-old Angel, Juliana, doesn’t really play with children or work to make friends. Although interactions with others are part of her Individualized Education Program goals, it’s her relationship with her younger sister, Jessa, that I want to ensure is thriving. Sibling relationships can be hit or miss. I…
When I find the time to do an activity I need to do and enjoy doing, I feel like I’ve hit the lottery. It’s time to head back to school and begin the daily workout of getting my 13-year-old Angel, Juliana, ready. Before we head off to school, however,…
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