Hello and welcome to Sara's Page. Thanks for stopping by and welcome to her walk with Aicardi Syndrome.  (See link to Aicardi page below)
Aicardi syndrome is a rare genetic disorder identified by the French Neurologist, Dr. Jean Aicardi in 1965. The number of identified cases of children with Aicardi syndrome is very difficult to calculate accurately, but has been estimated at 300 - 500 worldwide.
Aicardi syndrome is characterized by the following "markers":
1. Absence of the corpus callosum, either partial or complete (the corpus callosum is the part of the brain which sits between the right and left sides of the brain and allows the right side to communicate with the left.)
2. Infantile spasms (a form of seizures)
3. Lesions or "lacunae" of the retina of the eye that are very specific to this disorder. Other types of defects of the brain such as microcephaly, (small brain); enlarged ventricles; or porencephalic cysts (a gap in the brain where there should be healthy brain tissue) Aicardi Syndrome only effects girls.  We were just given this diagnosis in January 2007.  Treatment of Aicardi syndrome primarily involves management of seizures and early/continuing intervention programs for developmental delays. Prognosis for these children varies. Almost all experience developmental delays, with the majority facing moderate to severe mental retardation.

Sara's walk up until this point has been a rough one.  She started having seizures, infantile spasms when she was 6 weeks old.  We tried Phenobarb right away and got 3 days with no seizures and then they came back with avengance.  She's been on 7 differen't anticonvulsants.  We even tried a steriod injection called ACTH with no results.  She would have so many seizures a day that we would lose count.  We had hoped the steriod would be the golden ticket but it did nothing.  She somehow lost the ability to suckle within days of stopping the steriod and was admitted to the hospital again.  She spent 103 days there her first year of life. It became our home. We celebrated anniversary's and birthday's there. She had a G-tube put in her tummy 3/18/03 and now recieves all her nutrition and medication through it.  She likes to sample some things but it's like she's not sure what to do with it when it's in her mouth.  She's had so many video eeg's that we lost count.  We were lucky enough to have a focal point to her seizures, unfortunatley it was her left hemisphere.  She underwent a functional left sided hemispherectomy 6/12/03.  I would love to tell you that she's seizure free but I can not.  She is so much better though.  She has generalized tonic clonic/secondary complex partial seizures.  She averages about 1-2 a day and sometimes we get lucky and get a few days without any but they always seem to come back.  She was a good candiate for a VNS (Vagus nerve stimulator) and had one put in her chest August 8, 2005.  It helps alot.  Now when she has a seizure she usually does need to get Diastat to stop it.  A couple of swipes over the VNS and they go away.

The new diagnosis does not change anything that we have done in the past or anything that we will do in the future.  It just gives us an answer.  Our neurologist who we just adore and trust completely feels we have given her the best quality care and that we have made all the right decisions.  She is a blessing in our lives.  There are many things that she can not do.  She can't walk, crawl, talk, eat or do most of the things that children her age and younger can do and we don't know if she ever will.  She has glasses that we try to get on her daily and she likes to toss across them room. It's a constant battle but we try.

Sometimes reality is very hard on Jeff and I as well as Sara's big sister Amy.  We all want the best for our children.  We want them to grow and explore, find happiness and do all the things that their hearts desire.  We want those same things for Sara.  We have stopped putting our sites on the BIG things and rejoice in the little things.  Things that may seem like small milestones to other families are worth celebrating in our house.  Like the one and only time Amy and I heard her say "momma."  WOW.  What a gift from God that was.  She's taught us so much.  She's been though more then the average adult will ever endure in a life time and yet she never complains.  She's taught us that even though life can be unpredictible and unfair it can also be filled with tremendous joy.  She has taught Jeff and I that we are strong enough.  As her parents we are indeed strong enough to handle what life throws at us.  She has taught us the value of family and the meaning of joy.  She's taught us to laugh out loud over the silly little things and to not be ashamed of our tears.  She has taught us that it's ok to not be "normal" to not fit into society's mold but to create our own mold, our own normal. She has taught us the true meaning of having faith.  Even though it's very hard to hold onto something that we can not see or touch she has taught us to hold on anyway.  Even when were angry and questioning His plan she has taught us to hold on.  We believe that she knows the Lord has grand plans for her and she's here doing her job.  We believe she will one day be greeted with the words. "Well done Sara, well done." and she will walk, yes walk the streets of gold.  She has taught us love, real love, great big love and I can't imagine life any other way.  We are blessed.












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Aicardi Syndrome

Journal

Saturday, May 2, 2009 2:44 PM CDT

visit us at our new site

http://www.caringbridge.org/visit/saraswalk

Hospital Information:

Patient Room: Home for Good :o)

Hackensack University Medical Center
30 Prospect Avenue
Hackensack, NJ 07601

Links:

E-mail Author: jbashoffman@embarqmail.com

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