Haley's first seizure was on January 29th, 2001. That day that our lives took a turn and we would not know her proper diagnosis for another six and a half years. This video captures how Dravet syndrome along with multiple seizures cause a cognitive decline and many physical disabilities in our children. This video does contain two seizures.
This site is dedicated to our little hero, Haley. She is a brave young lady who suffers from a rare seizure disorder called Dravet syndrome, or Severe Myoclonic Epilepsy of Infancy (SMEI). Haley has been battling this disorder since whe was five months old. There is no cure for Dravet syndrome and Haley will never out-grow her seizures. Despite all of the hardships in her life, Haley remains a happy, loving, smiling little girl who has taught us much about what is really important in life. She has inspired many others through her tenacity and positive attitude towards life.
Dravet syndrome was first described by French physician, Dr. Charlotte Dravet in 1978. It is a rare disorder caused by a genetic mutation in a protein that regulates electrical activity in the brain. People with SMEI experience almost every type of seizure known. The first seizure usually occurs in an otherwise normal, healthy infant before one year of age and is usually associated with fever. Initially, generalized tonic-clonic seizures (Grand Mal Seizures) occur every few months and tend to turn into "status epilepticus" (a prolonged seizure that is very difficult to stop, even with medication). Other seizure types begin to appear during the toddler months and seizures become more frequent, sometimes occurring hundreds of times a day. Most children with Dravet will experience a plateau or regression of developmental skills during the second year of life. Individuals with Dravet syndrome have only an 85% chance of surviving to adulthood.
Haley and family with Dr. Charlotte Dravet
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.
The most encouraging advancement in the treatment of Dravet syndrome is in the anecdotal evidence coming out of Colorado in the form of artisanal cannibidoil oils from the Realm of Caring in the form of Charlotte's Web Hemp Oil. The FDA research studies on GW Pharmaceutical's purified form of CBD (Cannabidoil) is also showing promise as they enter phase three trails in the first quarter of 2015.
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