Praying for a Miracle...
 Hoping for a cure...
Fighting for a chance for Alex
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Our  Story
When I found out I was having my third child I was so excited. My life was going just as I planned. I was confident in my motherly duties and that I knew what to expect. We started to prepare for our new arrival. We got the minivan and a bigger home to accommodate everyone. But there was nothing I could have done that would prepare me for the road ahead.

On July 9, 2005 our precious baby Alex arrived. Instead of celebrating I had a pit in my stomach...I knew something was wrong. I tried to shake off my nerves by attributing my fears to the urine reflex  (found prenatally ) Alex had. I calmed myself down by saying that Alex was going to be ok.

Just as I was getting into a routine of having three kids..life threw us a curve ball.

Alex was 4 1/2 months old and as cute as can be. He seemed a little lethargic and out of it, but I thought he was just tired. I put Alex in his bouncy to get the other two kids dinner. My mother-in-law happened to come over that night. She picked Alex up and cried out that something was wrong with the baby....ALEX WAS HAVING A SEIZURE!!!! I called 911 frantic and hysterical. Alex was completely blue. I thought the worst and I was so afraid. What was wrong with my baby? Finally, the seizure stopped and Alex was sleeping. The ambulance drivers tried to comfort me by telling me it was just a febrile seizure (Alex spiked a low grade fever) and it was very common.

Alex got admitted to the hospital. He had a CAT Scan, lumbar puncture, and an EEG. All normal. Thank God Alex is going to be ok. It was just a febrile seizure...I can handle that, right?

For two months Alex was ok., then BAM, another seizure. This time it was short, and he did spike another low grade fever due to a double ear infection. But this time the seizures would stay...there were no more breaks...we started Anti Epileptic Drugs..Alex had epilepsy.

We spent the next two years in and out of hospitals (mostly in). We tried several seizure medications, multiple at a time, and still no control. We traveled to all the "best" hospitals, in all different states, still no answers. All his tests were normal. We were devastated.

I spent many nights researching the web. I came across a website with a type of epilepsy called Dravet syndrome. When I read it, I  knew that Alex had Dravet..he had all of the symptoms (he was about 8 months old). A neurologist in our practice told me that there was no way my son had this..they tested the SCNIA gene and Alex's was not mutated. She assured me he did not have this. A couple months later, while waiting in a crowed waiting room, the same neurologist came to me and said that she presented Alex's case at the Epilepsy conference, and all the doctors agreed that he had Dravet. I was again devastated. Alex personal neurologist would tell me "he was on the spectrum" but was hesitant to diagnosis him. Since most of the doctors in the practice didn't believe he had this, it caused them to put Alex on a medication regimen that was completely wrong for his disorder. He was put on the wrong medicines, the wrong doses. There are some medications, like Lamitcal for example, that should be completely avoided for kids with Dravet for it makes the seizures even worse!!! This was in fact the case for Alex.We suffered many tonic clonic status seizures on Lamital and many PICU stays. Therefore getting a diagnosis is critical in the pursuit of reaching the most optimal seizure control and acheiving less developmental disabilities.

In  August 2008, we attended a family conference in Chicago about Dravet syndrome. It was organized by the IDEA League. It was there that we met with a top Neurologist in the field and it was confirmed what I new all along...Alex had Dravet Syndrome. Finally answers. It was very surreal though , we went to the conference unsure if Alex even had Dravet and we left there seeing that he was on the more severely affected on the spectrum. The emotional roller coaster continued. We now had to accept that fact that we had to prepare Alex for adult care rather than college. This is a very painful reality of his syndrome. We are still praying for our miracle and for a chance for Alex.

I am committed to doing everything I can to help Alex. He is my inspiration and I'm so incredibly thankful to have him. Having a special needs child really puts life into perspective. I thank God everyday for my children..they are truly a blessing.  I believe in miracles and I will continue to pray for Alex's.
You can contact the family at: dina@achanceforalex.com
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