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,…
A Glass Half Full – a Column by Sabrina L. Johnson
I don’t make it a habit to feel sorry for myself. Twelve years ago, when my husband and I learned we’d be raising a daughter with Angelman syndrome, we decided that pity was an emotion we wouldn’t welcome. But when tough times come your way, it can be…
Believe it or not, I have something in common with celebrities Jessica Simpson, Drew Barrymore, and Nicki Minaj. What’s our bonding link? We’ve all quit alcohol. When people decide that they’d rather not drink, there may be a host of reasons, such as mental and physical health. As…
When you’re a caregiver to someone with a neurogenetic disorder like Angelman syndrome, you learn that progress can’t be rushed. It’s a belief I’ve come to embrace while raising my 13-year-old Angel, Juliana. Holding onto this ideal is important as I reflect on her progress with the ramp…
I’m a sucker for research and studies, especially those involving Angelman syndrome. Such is the case with a recent study highlighting that parents of children with Angelman syndrome are less productive economically. Angelman Syndrome News does a great job summarizing the findings from the study “Estimating the impact…
Caregiving comes in many different forms. For me, it shows up in the support for and care of my 13-year-old daughter, Juliana, who has Angelman syndrome. But I also have friends who are caring for aging parents or spouses. Care may include daily assistance like dressing and feeding or…
Having a pet in your family is a big responsibility. That’s why I delayed getting one until my daughters were older. Having a daughter with Angelman syndrome means that issues like sleep, acid reflux, and even ataxia consistently require my attention. It took time for me to…
Since my 13-year-old Angel, Juliana, was little, I’ve been hearing the word “guardianship” repeatedly. I recently got an official welcome to that legal process during Juliana’s final meeting of the year for her individualized education program (IEP). Guardianship is necessary for those with Angelman syndrome because Angels require…
I wasn’t surprised or outraged when I read the news article “‘They matter too’ Las Vegas mom upset over special needs son’s exclusion in yearbook,” by Joshua Peguero. Instead, I felt fueled and encouraged. It was a wake-up call to continue writing about Angelman syndrome (AS) and advocating…
Sixth grade is just about over for my 13-year-old Angel, Juliana. The year has gone well despite the tough decision we faced with school choice. When you’re transitioning to middle school in special education, your home school and your student’s abilities all come into play. I didn’t know what the…
Recent Posts
- Angelman syndrome has shaped how we celebrate our son’s birthday
- MVX-220 Angelman gene therapy trial enters first human testing
- Recognizing the importance of exercise for Angelman caregivers
- When the world forgets our children
- Dosing begins in broader trial of Angelman syndrome therapy
- The guessing game involved in caring for a nonverbal child
- MVX-220 for Angelman syndrome earns FDA fast track status
- Starting seizure medicine has us grappling with anxiety and doubt
- Genetic medicine could target Angelman’s root cause
- ‘Urgent need’ for treatment drives GTX-102 study enrollment