Team Marlin Maniac Fishes for Haley Smith and Idea League at The ASA on December 13th

Virginia Beach National Tournament – ASA STRIPER TOURNAMENT – Virginia Beach, VA

 

Haley is a beautiful little girl who has suffered from uncontrolled seizures since she was five months old. She had seen over four neurologists until one finally diagnosed Haley with Dravet syndrome. Dravet syndrome (named after the French doctor, Charlotte Dravet, who discovered the disorder in 1978) is a rare malignant and catastrophic epileptic syndrome (sometimes referred to as Severe Myoclonic Epilepsy of Infancy) and is caused by a genetic mutation that interferes with protein development in sodium channels of the brain’s neurons. Most children with Dravet syndrome have not inherited the condition from their parents. Haley’s mutation was a “di novo” missense mutation in the SCN1A gene.

The Marlin Maniac II now sports a picture of Haley

 

David Nova has been a friend of Haley’s parents and was in their wedding in 1996.  When David read the article about Haley, he decided to get very involved.   He was very determined to help the IDEA League secure one of the $50,000 grants from the Case Foundation. We are positive that because of David’s dedication to the cause and connections in the fishing world, he inspired many to join in the giving.  The IDEA League did secure one of the four $50,000 grants. 

David is a part-time professional sports fisherman sponsored by Reggie Fountain & Fountain Boats. In March David surprised our family and touched our hearts deeply.  On his own David contacted the IDEA League to get a copy of the logo and permission to put it on a new boat he was getting.  Along with the IDEA League logo, David added the words, "raising awareness for" and a picture of Haley in the Outer Banks, NC.  Beneath her picture is her name, "Haley".  Words can not express the emotions I felt when I drove by the new vessel and saw a picture of Haley, her name, and the IDEA League logo.  Tears filled my eyes and streamed down my face.  I was amazed that someone would reach out to our family in the way David did.  He wanted to bring awareness to this devastating syndrome and help Haley any way he could.  His fishes numerous tournaments up and down the East coast.  You may see Haley and the Marlin Maniac II  on I-95 one day.  David’s generosity extends past the picture and logo, he now shares a portion of his winnings from American Striper Association Tournaments with the IDEA League. He is not only a hero to Haley and our family, but to ALL the children who suffer with Dravet syndrome.

Help raise awareness for Dravet syndrome at The American Striper Association Tournament this weekend. Or Donate online at these Webpages:

www.idea-league.org

http://www.haleyismyhero.com/

Published by Hank Sibley Bluewater Yacht Sales

Hank Sibley hsibley@bwys.com Sales Professional Bluewater Yacht Sales Hampton, VA 804.337.1945 (Mobile) 757.788.7082 (Office) 757.723.3329 (Fax)

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