Haley is a beautiful girl who has suffered from seizures since she was five months old.  Her first two seizures were prolonged in length, over 25 minutes and 45 minutes respectively.  It was first thought that Haley’s seizures were febrile because they occurred with ear infections and she displayed no other symptoms of something more serious.  Haley continued to have seizures regularly, but was developmentally normal and in some ways ahead of her peers.  Because of her “normal” development the neurologist and her pediatrician thought Haley would outgrow her seizures.  It was not until she turned two that she went on a regular daily dose of anti-seizure medications.  Prior to two she was given Diastat rectally at the onset of every seizure.  The longest Haley has gone without a seizure was her first five months of life.  She did have another stretch of a few months after having tubes put in her ears that made us think we could have ONE more child.  We were blessed with twins that arrived early when Haley was two and a half.  At the age of three, we started to notice that Haley was stagnating in cognitive development.  She was also on her third neurologist at this point and her seizures had increased dramatically. At four we traveled to Johns Hopkins and tried the Modified Atkins and the Ketogenic diets.  We felt we got some benefit from the diet, but little did we know then that the medications she was on (Lamictal and Dilantin, both sodium channel blockers) were causing increased seizures.  It would not be until 2007 when Haley turned seven that we finally got answers to her pervasive seizures.  We went through five neurologists, three medical diets, failed over a dozen medications, tried some alternative therapies before we found out Haley had Dravet syndrome.

Dravet syndrome can be caused by a mutation in the SCN1A gene (a sodium channel gene).  Most children do have the mutation, but others are found to be clinically diagnosed with Dravet syndrome.

The majority of the cases the mutation occurs di novo, meaning not inherited, it just happened.  This is the case with Haley.  Neither parent carries the mutation.  Dravet syndrome has caused global delays for Haley.  She is presently eleven years old, but operates somewhere between a 3-5 year old level.  She has much more receptive language than expressive language and can understand more than she can say.  Her motor skills, both gross and fine, are hindered by her syndrome.  She also has some difficulty walking.  She had surgery on her ankles last year to help with her gait, but we are looking at another surgery in her future to address it further.  Overall Haley is a happy young lady that does not know anything but love.  She is our inspiration to help others on their journey with Dravet or other disability.  She has opened our eyes to a world that we in the past may have shunned.  I cannot even begin to name all the individuals who are impacted by Haley. She has a contagious smile and laugh that we love hearing.  We thank God for her being in our lives, she has definitely made ALL of us, her mom, dad and her brothers, better people because of her presence.
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www.haleyismyhero.com

Thank you and for more of Haley’s story click on the link above! My name is Susan and I am the Founder & President of The Epilepsy Warriors Foundation! Haley’s Mom is a very close and special friend of mine for more information on Dravet Syndrome please go to www.dravet.org and learn, educate and help raise awareness for not only Haley but our countless other Children who suffer from this devastating debilitating form of Epilepsy. DISABILITY IS NOT INABILITY!

Thank You for your support on behalf of Haley and her family and all the Children and Parents we are grateful!

Susan Noble