International Angelman Day & Launch

Today is International Angelman Day!  Since Maeve’s diagnosis of Angelman syndrome in August ‘19, we have done a lot of listening, reading, researching, and general “soaking” in this new-to-us rare disease world.  We’ve met (in person and virtually) a slew of remarkable families who have angels of their own, and we’ve been inspired by their tireless passion […]

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 […]