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Angelman syndrome
kathleenganderson

FAST GALA 2019

Our weekend at the FAST Summit and Gala in Chicago was full of dichotomies: it was intimidating & welcoming, exciting & scary, enlightening & confusing, draining & exhilarating, freeing & burdensome, heartwarming & heartbreaking, sad & joyful (I could go on)… which all makes sense because that’s sort of like our life with Maeve: deeply challenging and unbelievably wonderful.   Nathan

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Angelman syndrome
kathleenganderson

Influencer

I am an Influencer. Meet my target demographic, my top followers.They use only the products I hand select. They almost exclusively wear the wardrobe I’ve curated, and they listen to music by my favorite artists.  They travel to the same destinations as me and (loosely) follow my diet and exercise plan. They watch the movies and read the books I recommend.  They

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Angelman syndrome
kathleenganderson

The Diagnosis

We found out today after a looooong, deeply challenging wait that our Maeve Elliot (Maever Baever Mae Bae Maeverly Maevelicious Nuggle Wuggle Buggle) has Angelman Syndrome, a rare (about one in 15,000) neuro-genetic disorder caused by a deletion on a critical part of her 15th chromosome.  The diagnosis explains so much, even back to her struggle to nurse, bottle feed,

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