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It’s been a year since our son, Jude, was diagnosed with Angelman syndrome (deletion of the UBE3A gene) at 16 months old. The past year has been a roller coaster of appointments, endless research, and overwhelming emotions. For the first few months after his diagnosis, I’d stay up late going down…

In the past month, I’ve felt pangs of guilt about several things while caring for my 2-year-old son, Jude, who lives with Angelman syndrome. I feel guilty while helping Jude learn to communicate or develop other skills for daily life. I’m fearful that I’m holding him back from learning…

As a caregiver, I understand that raising awareness about Angelman syndrome requires us to proactively educate the public. This can be done via social media or by organizing and participating in advocacy events. No gesture is too small. We’re encouraging our community to show support on International Angelman…

The beginning of a new year is a hopeful and optimistic time. It’s symbolic of a fresh start, providing an opportunity to reflect on the past and embrace the future. Hope can be challenging to let in when caring for a person with Angelman syndrome, a rare neurogenetic disorder…

Prior to receiving our son Jude’s diagnosis of Angelman syndrome last April, when he was just 16 months old, we beamed with pride that he was a social butterfly who brought joy to everyone he met. Jude’s cheerful personality has always drawn attention. Passersby, checkout cashiers, and waitresses often…

In September, my husband and I marked a year since my son Jude, then 9 months old, started early intervention therapy, the standard of treatment for managing speech, movement, and balance disorders in those living with Angelman syndrome. A doctor who’d been treating Jude for sleep…

At 11:12 a.m. on Christmas Eve last year, I sent a text. Our son, Jude, had just turned 1, and over the past four months we’d become increasingly worried that he wasn’t meeting his developmental milestones. He was a month away from being assessed for cerebral palsy (a common…

Nothing can prepare you for the beautiful and chaotic roller coaster of raising a child. For a brief moment, we felt as though the path we’d expected to follow went completely off course when we learned our one and only child would live a life of significant disadvantage. My name…

As the caregiver to my 14-year-old daughter, Juliana, I’ve learned a precious life lesson that helps me function better while living with Angelman syndrome. What’s the lesson? It’s that I can’t live my life like everyone else. Years ago, when I realized this, my world got simpler. This realization…

As Juliana, my 13-year-old daughter with Angelman syndrome, gets older, improving her skills stays at the forefront of our daily living. We work on toileting, tooth brushing, and stair climbing. Any task that practices her fine motor skills is also on the list. One of those…