Letter from Amelia

OrionDear Newly Diagnosed Parent, I remember the day my 14-month-old son Orion was diagnosed with Angelman syndrome – devastating, crushing, hopeless. I heard words that no parent ever imagines hearing about their child.

This is a point/counterpoint one year after diagnosis that I hope will give you hope for a future – not at all as you expected – but richer than you could ever imagine.

“Your son has Angelman syndrome.” I had never heard of that before diagnosis day.

“He will never talk.” Orion is 2, and he babbles. He uses his voice and gestures to communicate. He is also learning to use his AAC (augmentative and alternative communication) device.

“He will probably walk … eventually.” Orion started walking at 19 months. He is now 2 years old, and he is running!

“He will be severely intellectually disabled.” Orion understands everything, responds appropriately when he wants, and continues to amuse us with his wit and intelligence.

“He will continue to have seizures.” We have seizures under control thanks to neurofeedback and the Low Glycemic Index Treatment diet.

“He will never have a job.” He is always finding creative solutions to problems. I think he may be an engineer … or a male model because he is incredibly handsome!

“He will have problems learning even the simplest of tasks.” He is potty trained at 2 years old. I know many neurotypical boys who aren’t potty trained at that age.

“He will need 24-hour-care for the rest of his life.” That is already not true.

Orion is not his diagnosis. He is very capable. He works really hard, and we push him even harder. His smile is magnetizing, and everyone adores him.

There is hope, there is always hope!

Love,

Amelia, an Angelman parent just like you

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