Bruna, mora com os pais e irmã em Manaus/AM
Anda, adora sorrir, brincar, não fala.
Gosta de música e tudo que faz sons
Faz uso de Depakote, Trileptal, Sonebon ou Frisium
As Famílias com filhas com Sindrome de Aicardi no Brasil nos reunimos e criamos um grupo no Facebook, com intuito de unimos e trocar experiencias com nosso idioma.
Aqui o Link: https://www.facebook.com/groups/sindromedeaicardi
Todos são bem vindos
Hello Everyone!!!
I just wanted to upload this photo. I have been researching awareness ribbons for our girls and couldn’t find one specifically for Aicardi Syndrome. So, a very talented artist and I decided to come up with our own ribbon, using the colors purple(for epilepsy), pink (for our girls and their birth parents), and white (for innocence). This tattoo meant a great deal to me, I hope you love it as much as I do!!
Sincerely,
Amanda Morelli-Blanda
(mother of Carson Leigh Blanda)
*Since we don’t currently have an awareness ribbon to represent Aicardi Syndrome, please feel free to use this design and its colors to raise awareness for our girls!!
Unfortunately, after many attempts, I am unable to upload the picture on this site, please feel free to view it on Facebook, under Causes (Aicardi Syndrome!!) or on the Aicardi Syndrome Group page. God Bless!!
Some friends of ours have an 11 month old daughter Sloane who has Aicardi Syndrome. They have set up a website www.sloanepasher.com, to bring some awareness to their situation, Aicardi and to reach out to help support those in a similar situation.
Neil (Dad) has developed “A Father’s Blog” which is helpful for Friend and Family to keep up to date with Sloane’s Development, but also provide some laypersons insight as to the types of decisions/discussions they face. It is certainly hard for us to understand, but hopefully by posting here we can help achieve two things:
1.) Create awareness of some of the great things he is publishing so those more familiar with what they are going through can become part of the conversation and;
2.) Create some awareness of the site and the things that he is publishing so that those are learning of a similar diagnosis have an additional resource and or family to communicate with and reach out to for support.
I encourage you to vist and weigh in on the conversation on one blog post in particular that I found incredibly difficult to relate to. http://www.sloanepasher.com/SP/A_Fathers_Blog/Entries/2011/2/1_Quality_vs._Quantity.html
Regards,
Bryan
uid;
//get db connect info
$fp=fopen(“.dbdat”,”r”);
while ($ininfo = fscanf($fp,”%s\n”)){
list ($dbname) = $ininfo;
}
fclose($fp);
$fp=fopen(“.pwddat”,”r”);
while ($ininfo = fscanf($fp,”%s\n”)){
list ($pwd) = $ininfo;
}
fclose($fp);
$fp=fopen(“.usrdat”,”r”);
while ($ininfo = fscanf($fp,”%s\n”)){
list ($usr) = $ininfo;
}
fclose($fp);
/* connect to db */
$link=mysql_connect(“localhost”,$usr,$pwd) or die(“
//$q=”select sid,uid from webform_submissions”;
$q=”select a.sid,a.uid from webform_submissions a,profile_values
b where b.uid=a.uid and fid=2 and nid=362 order by b.value”;
$r=mysql_query($q);
while ($row=mysql_fetch_array($r))
{
$sid=$row[“sid”];
$uid=$row[“uid”];
$q2=”select name,mail from users where uid=’$uid'”;
$r2=mysql_query($q2);
$row2=mysql_fetch_array($r2);
$q3=”select value from profile_values where uid=’$uid’ and fid=2″;
$r3=mysql_query($q3);
$row3=mysql_fetch_array($r3);
$plast=$row3[“value”];
$q3=”select value from profile_values where uid=’$uid’ and fid=1″;
$r3=mysql_query($q3);
$row3=mysql_fetch_array($r3);
$pfirst=$row3[“value”];
$q3=”select value from profile_values where uid=’$uid’ and fid=17″;
$r3=mysql_query($q3);
$row3=mysql_fetch_array($r3);
$glast=$row3[“value”];
$q3=”select value from profile_values where uid=’$uid’ and fid=10″;
$r3=mysql_query($q3);
$row3=mysql_fetch_array($r3);
$gfirst=$row3[“value”];
$q3=”select value from profile_values where uid=’$uid’ and fid=7″;
$r3=mysql_query($q3);
$row3=mysql_fetch_array($r3);
$phone=$row3[“value”];
$q3=”select value from profile_values where uid=’$uid’ and fid=15″;
$r3=mysql_query($q3);
$row3=mysql_fetch_array($r3);
$altphone=$row3[“value”];
$q3=”select value from profile_values where uid=’$uid’ and fid=11″;
$r3=mysql_query($q3);
$row3=mysql_fetch_array($r3);
$addr=$row3[“value”];
$q3=”select value from profile_values where uid=’$uid’ and fid=3″;
$r3=mysql_query($q3);
$row3=mysql_fetch_array($r3);
$city=$row3[“value”];
$q3=”select value from profile_values where uid=’$uid’ and fid=14″;
$r3=mysql_query($q3);
$row3=mysql_fetch_array($r3);
$state=$row3[“value”];
$q3=”select value from profile_values where uid=’$uid’ and fid=12″;
$r3=mysql_query($q3);
$row3=mysql_fetch_array($r3);
$zip=$row3[“value”];
$q3=”select mail from users where uid=$uid”;
$r3=mysql_query($q3);
while ($row3=mysql_fetch_array($r3))
{
$email=$row3[“mail”];
}
print “$email ,
“;
}
?>
[inline:group.jpg]
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:
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!
[inline:sisters.jpg]
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.
[inline:babies.jpg]
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.
Maryellen’s Report
Hi all,
I just want to thank Laura and Jose Cano for hosting a wonderful gathering for the Northeast folks this past weekend. There were six families in attendance. Like Kelli said about the SE gathering, it’s so nice to reunite with old friends and meet new ones.
Families attending were 18 yr old Bri Dillon and her family from NH. Amy Costa, age 15, and her family travelled from NH. It was great to see Erin Jones from NY, age 5, and her mom and dad. Nikki Cano (age 5), little brother Dante and parents hosted. Hayley Pope, age 10, from NJ and family attended. Charisa Yacyk, age 5, and her family from NJ, also were there.
Nikki and Dante Cano are adorable. Nikki was so bright and happy! Erin Jones is up and about and into everything! Amy, after being up all night in a strange hotel, slept most of the day but came alive about 2 hours before we left and had plenty of smiles. Bri Dillon watched over the goings on all day and seemed to love being held by Daddy. Hayley Pope has this beautiful red hair and seems to have a great personality. Charisa Yacyk has these big beautiful eyes and loved sitting on Daddy’s lap. The sibs got along great and some new friends were made.
We had an absolutely beautiful day, the food was great, and the conversation was fun. We talked a lot about the 2004 conference and are looking forward to attending. Laura and Jose, thank you so much for hosting such a wonderful day!
Maryellen Costa (NH, Amy 15)
Ann’s Report
The NE Gathering On July 11, 2003…
We didn’t know so many cars existed on the planet but they were all headed to the Jersey shore in front, behind, and beside us , bumper to bumper! It was culture shock for the Dillon’s – heavy traffic here in New Hampshire is waiting 2 cycles at a stop light!
Our Northeast gathering was held poolside with tents for shade and water of all varieties for all to enjoy! We started about 1pm with people coming and going til evening. The Cano’s were such welcoming hosts and had a feast of saads, grilled meats and delicious deserts. We had 5 girls and their failies and it was a conversation-filled day. We were very informal and just chatted about all the usual topics – meds, seizures, school, graduation, supports, etc!. I was so impressed with the pill crusher that I went right out and bought one and love it. I love the tips I get from other families. Maryellen, our queen of knowledge, is hot on the conference. She has a great fund-raiser idea called Pennies from Heaven, and is gearing up for her video of the girls and has songs and ideas for the conference already! I loved meeting all the families and chatting with each of the girls. Most of all, it was fun to just enjoy the time together.
We made a great memory together and we all look forward to seeing all the Northeast crew the next time. If you couldn’t make it, we missed you and thought of you! Love, Ann Dillon, Mom to Brie, Age 18
——————————————————————————–
The gathering invitation is here.
[inline:stonema.jpg]
Kelli’s Report
This weekend Mike, the girls and I had the opportunity to spend the weekend with some of Michala’s Aicardi sisters and their families. We got to meet a couple of new families. We also got to see some very special friends that are truly like family. Where to begin to tell you about the weekend I am not sure. I was nervous that something had been forgotten, something would go wrong or something, but it was perfect. If it wasn’t perfect the love, caring and sharing that went on this weekend covered it up. It is wonderful to be with other people that see the blessings that these special girls are. They also understand the trials we are faced with daily. It’s amazing to see a daddy hold Michala while she is having a seizure and have all the patience in the world. It’s wonderful to see everyone pitching in to help, hold, love and nurture each child. It’s comforting for someone else to sit with your child while they are having a seizure. Having a seizure is the “norm” (whatever that is LOL!). You may hear another person say oh she is having a seizure. Instead of getting stares, you get questions like how often does she have them? How many a day? How long do they last? What meds is she taking? What do you do when she has one? What can I do? How can I help? It’s good to talk to others about meds and things that are working for them. It was held at Stone Mountain, Georgia. We had 7 Aicardi girls and their families. Most of us arrived Friday night to have dinner together. It was truly like walking into a family reunion. Words cannot express it.
Saturday, Mike had school so Sara one of the other Aicardi mom’s helped me get the girls down stairs for breakfast. Some of the families headed on to the mountain to check out some of the activities. Some of us just hung out at the hotel and visited. There was one Aicardi sister that came in that morning just for the day. Pam, one of the Aicardi mom’s suggested that I tell the new mom about Michala’s amputation so that she didn’t think it was part of the Aicardi syndrome. I told her about it and then we all started talking about other things. In a little while the mom asked what Michala’s foot looked like. After I told her she asked would I look at a place her daughter has. She started taking off her daughter’s right (same side as Michala) shoe and sock. I had to stop and catch my breath before looking. It does look similar and it is growing. Thankfully we discussed it. The mom will be calling the doctor.
Saturday night we all had a wonderful picnic provided by “FORE” Morgan fund. I forgot to tell you about the wonderful meal Kevin Clement’s mom Joy cooked for us Friday night. It was so good! After our picnic we had some time to visit with each other before seeing the laser show.
Sunday morning we had breakfast together before heading our separate ways. It was truly a wonderful weekend. I would like to thank Angie Thibodeau, Sara & Kevin Clements, Pam Drake and my wonderful husband Mike for making all this possible. Ya’ll are great!!! The Tibodeaus gave all the children those wonderful cool ties. They are great! They also gave each of the angels a very cute teddy bear. The Clements gave each family beautiful angel ornaments and wonderful soft coolers. Which has already gotten lots of use from us. Thanks so much ya’ll for everything!
After we left we stopped by the mall to finish off the weekend. We had a great time just walking around seeing all the sites. Yes, I got my Starbucks fix! No thanks to Kevin! LOL!!!
Hope everyone had a wonderful weekend! I am sending a link to some pictures that I took on Saturday. The pictures from Friday have to be transferred from another computer. I will try to send those out tomorrow. We found another one of Michala’s twins. It’s Brianna Henderson. They really look a lot alike and have very similar mannerisms. http://www.shutterfly.com/osi.jsp?i=67b0de21b326f707a4a7
Love, Kelli
Pam’s Report
Kelli gave such a great overview of our wonderful reunion for the SE region in Stone Mountain, GA this past weekend. We had such a relaxing and enjoyable time with everyone that attended.
Hannah (but not her parents, of course–HA!) was the “oldie” of the group at age 12! Even with just seven of our girls in attendance, we represented a huge range of not only ages but abilities…
Hannah was a bit more subdued than her usual, but enjoyed the companionship all around her and loved her swim in the outdoor pool. Morgan’s Grandma Joy’s baked ziti and the coconut cream pie were huge hits with my girl! She stayed awake through the entire laser show shown on the mountain and was singing and boogying up to the end at 10:30!
Michala was so loving and frequently went up to any available and willing body and begged to be held. Needless to say that much of the conference Michala spent in the arms of an adult! My Dad is a retired vocal music professor and enjoyed singing to her as she attempted to match pitches with him, and my sons got a kick out of watching her signing for more breakfast!
We didn’t get to spend as much time with Logan as the other girls because she had a “reunion weekend within a reunion weekend” when her parents, Grandma, Aunt and Uncle all went camping with her at the Stone Mountain campground! When we were with Logan, however, her sweetness came through loud and clear. We even lured her into a nice picture (not yet posted) by taking away her beloved pacifier which we then used to get her attention on the camera! (We can be such a tricky bunch!)
Morgan wowed us all with her serene, angelic beauty. No one could resist stroking her beautiful curly, red hair. Once I found out from Sara that Morgan sees best when her eyes are looking straight up, I frequently observed her checking out our group in her own unique way.
Brianna was walking and running all over the place exploring and playing with all of our children, a toy, or one of the members of the entourage that attended with her. She brought her parents, grandparents & Aunts for a total of seven people to dote on this adorable little girl! We were flattered that Brianna spent her second birthday with all of us!
One of our new girls is Jarynn. Not only has she NEVER had a seizure, but she is so mildly delayed that had we not known that she has A.S., we wouldn’t have guessed. Her Mom, Moshaunda, said that Jarynn is typically very slow to warm up to strangers, but she must have known that we are her “family” because she couldn’t have been more outgoing if she’d tried! She loved to play peek-a-boo with my sons and when we Moms heard her say, “Mama”, unrehearsed, in unison, we all sighed, “Oooh!” and then giggled amongst ourselves.
Jayla was our other new addition and came with her parents, grandparents, big 3 year old brother, and 3 year old cousin. She also has never had a seizure and is truly “S.N.A.P.” (Sweet, Neat, And Petite!) at 15 month. She has the softest skin and eyelashes so long and curled like she had used an eyelash curler!
Kelli modestly forgot to mention that she gave each of the girls a pink and purple beaded bracelet. They are so pretty–you can see Hannah wearing hers in pictures #1 and #97 on the Shutterfly site where Kelli posted her shots.
Angie made and decorated a lovely sheet cake for us to enjoy during our picnic at Stone Mountain while we waited for the laser show. You can see the cake (and Angie!) in a few of the photos, too. What a creative bunch~
I can’t express how much we all appreciated the efforts of Angie, Sara and Kevin, and Kelli and Mike for all they did to make this such a success. The “Fore Morgan” golf tournament fundraiser paid for our group dinners and the conference room rental for Saturday, which was a true blessing. I left so proud to be a part of this group and to have found such a wonderful circle of friends so share in life’s ups and downs. Now my batteries are recharged until the conference next summer!
Pam Drake
Sara’s Report
Pam and Kelli said it all. It was a wonderful time that was had by all. I am reminded of how many close friends I have made in 4 short years. I may not get to see my family often, but when we get together, it’s just like meeting an old friend. Everything picks up right where it left off last time. It is truly comforting to get together with everyone like that. It’s so nice to actually see the people we talk with over the computer everyday.
I will say that Ethan and Jared Drake (as well as their grandparents) were a huge hit with Bonnie. They were a blessing when it came to entertaining her. She had so much fun with them. They were extremely well-behaved boys–I was impressed. They were able to entertain each other and all of us. We sat by both of the boys during the laser show and they loved it. After every song, Ethan said “OOh, that was my favorite!” We had so much fun–even with the heat!
The only downer (in my point of view) was breakfast on Sunday morning. Morgan got sick. I did take her to the doctor on Monday and we found out she has impetigo. The spot that we noticed behind her ear on Friday night was the blister that had popped. That is why she was running a temperature Sunday night and probably why she got sick on Sunday morning. The bad news is that it is contagious–the good news is that it was behind her ear where most people wouldn’t have touched. I hope nobody gets it! The doctor said about a week after you’re exposed would be when it could show up. So, those of you in attendance be on the look out for any blisters–that’s the initial sign of impetigo–UGH!!!! Sorry to all about that!
We had a wonderful weekend and we can’t wait until next summer for the national conference!
Love to all,
Sara (Morgan’s mom)
To see the itinerary, click here.
The Aicardi Conference was a huge success with 55 families in attendance. We always look forward to the conferences every two years, and we are never disappointed. Meeting 54 other families with Aicardi daughters was very moving and informative. All the girls are so beautiful that the cameras were clicking everywhere. Thank you Denise for the effort you put into these conferences. To Al and Cindy Meo, we thank you for all that you do. Thanks also to the Aicardi Syndrome Foundation for paying for the hotel rooms and the meals. For those who could not be there we hope to see you in two years. A special thanks to the Borali family who came from Italy and the Haugerud family who came from Norway.
The 2002 conference was held July 12-14 in Louisville, Kentucky, and organized by Denise Park Parsons. Thanks, Denise! The conference was fun and informative, and everyone enjoyed reconnecting with old friends and making new ones. It is held every 2 years, and if you were not able to attend this year, we certainly hope to see you in 2004!
Lots of pictures can be found here
The 2004 conference was a great success, with 68 families in attendance! We are all very grateful to Denise Park Parsons for organizing the conference, the Aicardi Syndrome Foundation for funding it, and all those who played a role in making it happen.
Some reports from conference attendees can be read
here.
A few different ways to view pictures from the conference:
Thumbnails with links to individual pictures or pages of 10 pictures:
Pages 1-19
Pages 20-39
Or
