Haley Is My Hero

The seizures associated with Dravet syndrome are very difficult to treat.  Many of the anti-epileptic drugs used in the U.S. are not effective for this disorder, and several of them can even make the seizures worse (Lamictal is one that really had an adverse effect with Haley and others with Dravet syndrome.)  Stiripentol (STP) is a French drug that has show promise in helping patients with Dravet syndrome, but it is not approved in the United States by the FDA.  Individuals with rare, life-threatening diseases can import medications that are not approved by the FDA into the U.S. on a compassionate use basis.  However, most insurance companies will not cover the cost of these drugs, which can be very high.  Haley was granted the opportunity to try STP in March of 2011 and has had greater seizure control and more cognitive advances since starting it.  STP works best in conjuction with Onfi (Frisium/Clobazam) and either Depakote or Topamax.

Due largely in part to the efforts of the Dravet Syndrome Foundation, more patients are being diagnosed with Dravet syndrome every day and at an earlier age.  (Haley was seven when she finally received an official diagnosis)  When Haley was diagnosed in 2007, it was thought there were only approximately 500 cases in the U.S.A.   since then it has been estimated that one person in 20,000-40,000 is on the Dravet Syndrome Spectrum.  This means that over 334,000 people in the world currently have Dravet syndrome, and one baby is born in the U.S. every other day with this rare condition.

The Dravet Syndrome Foundation is a volunteer-based, non-profit organization dedicated to aggressively raising research funds for Dravet syndrome and related conditions.  By offering research grants for syndrome-specific research with a novel approach, DSF can move researchers and the medical community forward to find better treatments and a cure while assisting afflicted individuals and their families.