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Hi!
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I am mom to Melorah Grace (age 11). My husband and I are founding members (john is a founding board member) of dravet.org, formally the IDEA League. It was the first non-profit Dravet group. Melorah wasn't diagnosed until Dr. Dravet saw her at the first Dravet conference in August of 2006. Due to the connection of the original group (the yahoo group that Kate Watts, a wonderful mom in the UK started), we were able to pretty much figure out that Melorah had Dravet syndrome before the conference. It is amazing how much these kids look alike, act alike and seize alike! It can be so frustrating to get a diagnosis.... at least it was several years ago. :)
Right now we are in a good spot for seizures however we still deal with autonomic issues. It is not uncommon for her to stop breathing or have irregular heart rates while sleeping. .
Among the many things dravet.org does (research, family support, advocacy, etc), they host the Dravet conference. Hopefully we will get to see many of you there! It is a great place to connect with our extended "family."
