Self-care doesn’t always take priority when you’re parenting someone with a neurogenic disorder like Angelman syndrome. But I’m walking proof that it should be. As a caregiver to my 13-year-old daughter, Juliana, I’ve been writing about Angelman syndrome for over 10 years. My goal is to be intentional…
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I’m facing a truth that I knew was coming: My 13-year-old Angel, Juliana, is bigger than me. Once hormones took over, the growth spurt wasn’t far behind. But when your child has a neurogenetic disorder like Angelman syndrome, which poses specific challenges, growth means more than a taller…
Anxiety is a normal characteristic of Angelman syndrome. Its triggers might include separation from a caregiver, noise, crowds, or a change in routine or environment. When things are going smoothly and my 13-year-old Angel, Juliana, is having good days, it’s easy to forget how easily these factors…
Organization has always come easy to me, and it plays a big part in improving my quality of life as a parent to a daughter with Angelman syndrome (AS). When the clocks sprang forward last weekend, it made me think about spring cleaning. I always do some things to…
My 13-year-old can do squats! Big deal, some may think — especially those who don’t know much about the constraints of a rare disease. An exercise that requires bending and balance is easy for the average kiddo. But for my daughter Juliana, who has Angelman syndrome, stooping without…
Working to keep your Angel out of apps on their iPad is an excellent problem to have. I love that my 13-year-old Angel, Juliana, knows her way around her device. But her exploration is becoming troublesome. As Juliana becomes proficient with her screen, I’m working overtime to keep her out…
My 13-year-old daughter, Juliana, has a rare, neurogenetic disease. That is a loaded statement, because most people don’t know what it means. I can’t blame them, of course, but that doesn’t mean I have to like it. It can be frustrating to describe Angelman syndrome (AS) to strangers,…
It’s official. I am the mom of a teenager. Parenting a teen is one thing, but navigating life with a teenage Angel will involve next-level motherhood. We celebrated my daughter Juliana’s 13th birthday this past weekend. Given all the good we’ve experienced in recent months, I’m cautiously optimistic that we…
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…
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