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The Aicardi Syndrome family conferences are a unique opportunity for families to come together to learn more about the syndrome, meet other Aicardi families, exchange ideas, and build networks of support together. Visit with old friends, establish new friendships, and put faces to the names of people with whom you have spoken online. Hear from experienced parents and professionals about topics of interest to families caring for an Aicardi child.

Kate Sullivan opened the conference with the following poem:

 

My Journey from the Shadow into the Sunshine
Kate Sullivan

 

Aicardi Syndrome, excuse me what did you say?
I’ve never heard of that, we all remember that day.
The diagnosis, the prognosis was too grim to bear
There’s no cure, no hope, and by the way it’s really rare

Is it something I did… I went for a run in the heat
Or was it the bug spray with too much deet?
I had a cup of coffee and a sip of wine
And on a few days I know I worked past nine

My mother always said God won’t give you more than you can handle,
Close your eyes, say a prayer and go light a candle.
Oh contraire, I must disagree,
This is not how my life is supposed to be.

But wait, look at the this angel that’s been delivered to us
So precious, so fragile, carry on we must
Experiencing unconditional love is how it will be
That sweet and innocent face will always amaze me

So we march on and take it one day at a time
It’s a rollercoaster ride that can change on a dime
But we find new meaning as we redefine the milestones
Maybe it’s a smile, facial recognition, or stronger tone
Holding her head up, swallowing or breathing on her own
Weight-bearing, sleeping through the night, or playing with a toy phone

Now Corpus Callosum and Infantile Spasm, roll off our tongue
As we’ve quickly become the medical experts for our young
But some days are a struggle when we don’t know what to do
Finding comfort, empathy and knowledge from each other, helps from feeling so blue

Our girls are so different, which is no surprise
But the challenges we face are like family ties
So take a moment to reach out to each other
Greet your neighbor and say hello to the amazing fathers and mothers!
WELCOME!

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We extend our deep and sincere thanks to Al and Cindy Meo and the Board of Directors of the Aicardi Syndrome Foundation for their continued dedication on behalf of our children and their families. Their financial support makes this conference possible, at no cost to families beyond their travel expenses.

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a summary from one conference attendee:

The program began Friday at noon and closed at approximately 1:100 pm on Sunday. Some families were able to arrive prior to the conference, to tour the area, as well as meet and spend time together with other families before the conference began Friday.

The program begin with a welcome ceremony then went to breakout sessions for Friday afternoon. Friday evening we had a wonderful dinner provided by the conference followed by an ice cream social.

Saturday started bright and early with breakfast and then went into our Keynote speakers. Our Keynote speakers were Elliott Sherr, MD PhD (UCSF, San Francisco, CA) and Igna Van den Veyver (Baylor College of Medicine, Houston, TX). They spoke about the latest updates in Aicardi syndrome genetic research. After lunch, the conference went to breakout sessions for the Saturday afternoon.

Saturday dinner led into a slide show with pictures of our children with Aicardi syndrome. The slide show was a tear-jerker, but the photos it held were great. Lots of wonderful memories from the past year. The dance followed and what a blast! The families looked like they had a great time.

Sunday came all too quickly. We again had a wonderful breakfast and followed by our last break-out session. Sunday culminated in a fantastic talent show.