Dravet-Ohio.org

What is Dravet Syndrome?

Dravet Syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a progressive childhood neurodevelopmental disorder characterized by severe epilepsy that does not respond well to treatmeant.  The syndrome name is pronounced dra-vey.  The diagnosis is confirmed with a genetic test.  Two parents can test negative for the disease and still have a child who tests positive.    

The purpose of this web site is to facilitate and educate the public about Dravet Syndrome.  We also have designed it to accept donations to help our family and eventually others, diagnosed with Dravet Syndrome, who live in Ohio and need to pay for medication.  Ultimately, we do not want any child to go undiagnosed or without treatment. 

In our personal story, we have two children, Jakob (age 10) and Colin (age 7), who are affected by Dravet Syndrome.  When Jakob was six months old our first major decision was mandatory.... for Mommy to stay home and care for him.  That was in the Fall of 2000.  Both of our boys began having seizures near six months of age.  They require one-on-one care every day.... all day... and all night.  These are not children that would have survived in any childcare setting.   

Despite the fact that we sought out medical care from three major medical institutions in the state...with world renowned neurologists and epileptologists... our family struggled for eight long years before the proper diagnosis was presented in late December  2007.  Dravet Syndrome with a positive mutation of the SCN1A gene. 

Finally- a genetic test became available for Dravet Syndrome in the United States.  We have learned since that very few doctors understand and are familiar with the Dravet Syndrome diagnosis.  So, why would they test for it with a $2,500 blood test?  Prior to Jakob's and Colin's diagnosis each team of doctors thought we would "...never find a source of their seizures."  For a long-time we were in constant search of a medical answer and frequently involved with epilepsy support resources in our community.  Somewhere along the way we stopped searching as hard and with faith accepted that our children were just going to have these horrible repetitive seizures every day and every night of their lives.  This was our reality and we had to learn to cope and accept the reality long-term. The miracle is that we now know the source of the seizures and doctors can treat them with the correct medications!  The medications are working!  Our challenge is to pay for the medicines and special needs services.  Your help is needed and greatly appreciated. 

Time to go ride the horses!  One of our favorite times of the year. 

Made possible by the Epilepsy Foundation of Central Ohio.

Camp for Champs

Two Central Ohio Boys With Dravet Syndrome.

You can help reduce their seizures and maintain a 95% seizure improvement rate!

- It is estimated that 334,000 people in the world currently have Dravet Syndrome.

- One baby is born in the U.S. every other day who will have the diagnosis...and their family may not know.

Due in a large part to the efforts of the IDEA League, more patients are diagnosed with Dravet Syndrome every day.  Until recently only about 500 cases had been reported world-wide. 

Jakob's & Colin's primary neurologist is

Dr. David Neal Franz at Cincinnati Children's Hospital Medical Center.  We are thankful for his patience,  persistence, and faith that Jake & Colin's quality of life can be improved.

http://www.cincinnatichildrens.org/svc/alpha/n/neurology/fs/fac/david-franz.htm