Haley Is My Hero
"A hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles."
~ Christopher Reeves
|Posted by haleyismyhero on June 7, 2015 at 11:35 PM|
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!!