Here Comes the Sun - a Column by Joelene Wand

Columns

FAST’s Global Science Summit reminded us of the power of hope

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…

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Processing the complexities of our son’s happy demeanor

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…

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Reflections after a year of early intervention therapy

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…

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Overcoming fear after an Angelman syndrome diagnosis

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…

Columns

Here comes the sun after our son’s Angelman syndrome diagnosis

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…