Haley Is My Hero

"A hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles." 
 ~ Christopher Reeves

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Growing Hope

Posted by haleyismyhero on June 7, 2015 at 11:35 PM Comments comments (0)

Tonight Dateline NBC aired the episode, Growing Hope, which highlighted "three moms" that changed VA law.  However, there were many others that were there to change the minds and hearts of legislators.  Without the whole team effort it would not have been possiible.  We were very blessed to be a part of this project.

Here are the links to the six segments:

Part 1:  

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Families Plead for Medical Marijuana

Posted by haleyismyhero on January 25, 2015 at 8:20 AM Comments comments (0)

This photo caught the me swiping her VNS with the magnet to stop the seizure.

http://www.wusa9.com/story/news/local/virginia/2015/01/22/med...

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Fighting to Educate

Posted by haleyismyhero on March 31, 2014 at 6:45 PM Comments comments (0)

http://www.wric.com/story/25121429/support-for-medical-marijuana-growing-in-virginia

We received a phone call today from the local ABC Richmond, VA station.  They had wanted to come out and interview us, but due to time constraints they had to do a phone interview.  Mark Tenia, the ABC reporter, did a great job of p...

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Back in the News

Posted by haleyismyhero on March 6, 2014 at 1:10 PM Comments comments (0)

http://wtvr.com/2014/03/05/va-mom-wants-pot-for-sick-girl/

Haley made the news again.  We were thankful that the story did have a more positive view of medical marijuana.  Joe St. George did a great job of emphasizing that the form of medical cannabis Haley would be using is a liquid form that is ingested and not smoked.  We were not too pleased about the "medical professional" chosen to dispute the...
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Nap-time/Nocturnal Seizures...

Posted by haleyismyhero on March 5, 2014 at 8:35 AM Comments comments (0)

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As Dravet syndrome progresses, the seizures migrate to nocturnal episodes.  At this point in Haley's life ANYTIME she falls asleep, the seizures seem to appear.  It is either in small twitches or a full generalized tonic clonic.  This is just one week of seizures that we saw at the end of Februar...

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