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:  http://www.nbcnews.com/dateline/video/full-episode--growing-hope-464847427875

Part 2:  http://www.nbcnews.com/dateline/video/growing-hope--part-2-464847939675

Part 3:  http://www.nbcnews.com/dateline/video/growing-hope--part-3-464847939629

Part 4:  http://www.nbcnews.com/dateline/video/growing-hope--part-4-464846915761

Part 5:  http://www.nbcnews.com/dateline/video/growing-hope--part-5-464846915746

Part 6:  http://www.nbcnews.com/dateline/video/growing-hope--part-6-464847427600

In January I was contacted by Dateline producer, Mario Garcia.  He was given my name as "a parent waiting for Hemp Oil to be shipped to Virignia".  We  spoke on the phone for a half hour about my daughter, Haley, and her struggles.  When he asked if we would move, I responded, "it would decimate our family.  My husband is self-employed and he cannot start all over.  And our twins, they would have to decide what parent they would want to live with...but it was never off the table completely."  He went on to say he would like to find a family that would move.  To that I replied, "You need to meet the Collins family.  They just moved back because their daugther, Jen, was having a difficult time being separated from her family.  The great part about this family's story is Jen is 'cognitively normal' and can tell you what it was like."  I explained we were all meeting on January 22nd for a lobby day and planned on having a press conference.  Mario said..."I might just join you..."  He did join us and saw Teresa Elder and Tommy.  Teresa's statement about she may bring back an 'empty wheelchair' next year just captured him.  That is where it began.

Dateline's crew followed us all day on our lobby day and chronicled the entire day.  It was an exhausting and exhilarating day.  We started off in the Senate Education and Health Committee at 8AM.  The day was filled with meetings, most of them were very positive.  One with a Senator was not that great ...but the last meeting of the day with the Speaker of the House, left us encouraged.  The biggest resistance that we came up against was the issue with Federal laws.  The General Assembly was not willing to go against the feds.  So end the end the law was designed after Virginia's "Conceal and Carry" law.  It would allow a patient to possess the oil and give them an affirmative defense if they were arrested by the Commonwealth.  It was far from perfect, but it was something.  

After the back and forth to Richmond and the General Assembly, Datelin visited each family at their homes.  They shot so much footage!!  Not only did my homeschooled twins get an education on "how a bill becomes a law", but they also learned on the ins and outs of a news story.  When Harry Smith came to the home it was surreal.  He was very down to earth and made the interview more of a conversation than an interview.

We are so blessed to be a part of this story.  We know our families represent the many families dealing with intractable epilepsy across the US looking for a treatment from the cannabis plant.  Some patients will need only CBD, some will need THCA, and some will need a combination of the two.  The journey that I have been on since I encountered a friend using cannabis for her daugther in California has defeintely been an eye opener.  I encourage everyone to read up on the issue...it is an emotionally charged one!  

I hope that one take away from this episode other than the issue of cannabis for epilepsy would be that IF you believe in something, then be willing to fight!  Surround yourself with like-minded people who are willing to work with you and you will be amazed how you can change the world.  At least the world where you live in!!

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/medical-marijuana-virginia-cannabis-oil-epilepsy/22181119/

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 presenting the subject in a balanced view.  Thanks Mr. Tenia!!

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 claims that marijuana can help with seizures.  If he was a neurologist that was against it that would have been fine.  However, Dr. Coleman runs a rehab center for addictions, admitting on his website that he, himself is a recovering addict.  So there is a conflict of interest.  But that is the news...created to make controversy.  I am just happy we are discussing the issue.  I hope the news media is aware they could be the force that makes or breaks the decision to allow medical cannabis.  Public opinion will have an impact on legislators decisions.  It is our goal to educate the public.  

Medical cannabis for Haley looks like this to me:  I would like a product grown and formulated by a responsible party that would be able to promise consistency in potency  and purity of the product.  I would like Haley to receive this product with the doctors recommendation and that he/she would not be prosecuted That together with her neurologists we could weigh the risk benefit for my Haley and that we would work together on this.  I have no desire to grow or cultivate marijuana or to smoke it at ALL!!  It would be like any other medication that she takes.  It would be used only for her. 

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 February.  This is WHY we are fighting for Medical Cannabis for Haley.


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