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Family Moving To Denver After Fight For Marijuana For Toddler Comes Up Empty

The family has officially decided to move to Denver, where they can more easily obtain the strains of marijuana needed to treat their two-year-old daughter.

The Wilson family has made headlines for seeking medical marijuana for two-year-old Vivian who suffers from Dravet syndrome, a rare form of epilepsy that causes her violent and frequent seizures. Photo: Courtesy of Meghan Wilson
The Wilson family has made headlines for seeking medical marijuana for two-year-old Vivian who suffers from Dravet syndrome, a rare form of epilepsy that causes her violent and frequent seizures. Photo: Courtesy of Meghan Wilson
After a long fight to loosen the state's medical marijuana laws, the Wilson family of Scotch Plains say change is not happening quickly enough to treat their two-year-old daughter Vivian.

The family has decided to move to Denver, where they can more easily obtain the strains of marijuana that have proven effective in treating Dravet syndrome, a rare form of epilepsy that causes Vivian to suffer frequent and violent seizures.

The Wilsons have been at the center of a fight that came to a head in August, when Gov. Christie visited Scotch Plains on a campaign stop and Brian Wilson confronted him, urging "Please don't let my daughter die." 

The following week, Christie gave conditional approval to a law that eliminates a three-strain limit on dispensaries and allows edible marijuana products for children.

Though the Wilsons were able to purchase medical marijuana from the Compassionate Care Foundation clinic in Egg Harbor Township recently, which they reduced to an oil so Vivian could ingest it, they were unable to get the oil tested to determine its strength and how to dose it to Vivian. Also, the strain was not high in CBD (cannabidols) - the non-psychoactive compound in the plant that has proven effective in treating Dravet syndrome, according to the Wilsons.

"They were calling it their CBD strain, but the label showed it had more THC than CBD and both levels were really low. Real CBD strains are hard to come by," Meghan Wilson told Patch on Saturday. "Aside from one dose, we never used the product from CCF. We didn’t feel comfortable, and our gut was telling us not to give it to her."

The Wilsons had then hoped a new bill introduced by Assemblywoman and former Fanwood Mayor Linda Stender might be the fix for a shortage of CBD strains here: It would allow for reciprocity of marijuana laws so that patients in New Jersey could order their treatments from out-of-state.

Christie shot down the bill at a press conference earlier this month, saying, "I am done expanding the medical marijuana program under any circumstances. ... And the program works fine for people who are truly ill."

"I think a big turning point for us moving was the reciprocity bill," Wilson told Patch. "And then the same day Gov. Christie said 'I’m done moving this forward,' a 15-month-old baby with Dravet died – Sabina Joana, whose parents had just gone through the whole process to get her card. We realized nothing is going to get better for as long as Christie is in office. This is Vivian’s life. We can’t wait anymore."

The Joana family, from Hopatcong, has also taken up the fight, vowing to turn their grief into action and confront the Governor.

The Wilsons did get a bit of good news, though, since deciding to move. Magical Butter, a company that makes machines to turn marijuana into butters and oils, has donated $10,000 toward their moving expenses. Check out Magical Butter's YouTube video of the family receiving the news on Christmas.

"We were shocked and thrilled," said Wilson. "It is such a generous donation that will help tremendously. The cost of moving is huge."

The Wilsons say though moving has become a necessity, it pains them to leave behind their families in New Jersey. 

"It’s heartbreaking," said Meghan Wilson. "At this point, it's a matter of let's put our emotions aside and make this happen. We're hoping we will only be out there for a couple years. In two years, the climate federally could be different, there could be special access laws for patients where they would be able to travel across state lines. And there are worse places to move. We're glad Charlotte's Web [a high-CBD strain named for a girl with Dravet] is in Denver."

Still, the Wilsons worry about all the New Jersey patients who can't move. 

"What would Christie do if this was his child?," Meghan Wilson says. "He has no respect for this program, no respect for the fact that the plant has healing qualities. He's doing everyone in the state a disservice and it's a shame. Things are changing, views on marijuana are changing. One day he’ll get it, or one day he or someone he loves will be stricken with an illness marijuana can treat. Maybe then he will feel some remorse for the way he’s treated our family."

READ MORE:

2-Year-Old Scotch Plains Girl Finally Receives Medical Marijuana

Medical Marijuana For Ailing Toddler Still Long Way Off

Medical Marijuana For Kids Bill Gets Final Assembly Approval

Changes to Medical Marijuana for Kids Act 'Not Ideal,' Bill Sponsor Says

Christie Gives Conditional Approval to Medical Marijuana For Kids

'Don't Let My Daughter Die,' Dad Urges Gov. to Sign Medical Marijuana Bill for Kids

Parents Seeking Medical Marijuana For Toddler Deliver Letters to Gov. Christie

Medical Marijuana For Toddler Inches Closer as Bill Passes

Medical Marijuana Bill Inspired by Scotch Plains Toddler Moves Forward

Medical Marijuana Fight for Scotch Plains Toddler Bolstered by Legislators



Lucretia B January 05, 2014 at 09:33 AM
.......and soon marijuana will be said to cure the common cold in ourselves and our children. There will be no need to fight it or let it ride for a week with orange juice and chicken soup to help us. It makes me wonder if all the effort to get the marijuana loose might be for the parents sake instead of the child.
Ben Novick January 05, 2014 at 10:21 AM
Gov. Christie is a fat dishonest F.
Al Beronio January 05, 2014 at 11:02 AM
Immortal Illumed, given that all 11 of your posts since last September have promoted the use of marijuana I guess it would be fair to say that you are somewhat onsessed with that substance. As for Hillary's election being assured because of her support for a drug...God help the USA. We'll go down the tubes of History, but by golly, we'll have free access to marijuana.
Henry Krinkle January 05, 2014 at 11:05 AM
The real facts prove that Christie is indeed a monster. His supporters need to take their blinders off...someday the beast will come for them too.
Al Beronio January 05, 2014 at 12:58 PM
Henry, just what are the "facts" that prove Christie is a monster? Care to respond. It's fine to throw bombs but if you can't back it up it is just so much bluster. By the way, I would suggest that his supporters, as you call them, comprise a rather significant number of Democrats if the results of the last election say anything.
Lucretia B January 05, 2014 at 01:51 PM
How could anyone possibly know just how marijuana would effect on this young child? No one does. Its feasible that shell bump into a wall or two or need helping around in general. Don't tell me that's good.
Annette Samuelson January 05, 2014 at 04:17 PM
Christie should be ashamed of himself. He is nothing but an obstinate bull headed man. This child and family have to leave New Jersey so the child can live. Actually, it is a blessing in disguise to move out of this state. Christie is going to run for president, Washington and Colorado are making incredible amount of tax money for schools and whatever civic matters to help their people. When it comes election time, we'll see who the people will vote for. You would see 100% turnaround if someone in Christie's family needed marijuana for health purposes.
Gordo K January 05, 2014 at 05:23 PM
The Food and Drug Administration (FDA) considers non-THC based hemp products to be "food based" and therefore legal without a medical marijuana license. CBD Rich Hemp Oil is legal in all 50 states. http://www.youtube.com/watch?v=eY7uWfqoPzk
Reeree Perrella January 05, 2014 at 08:01 PM
Christie is a monster.
Gordo K January 05, 2014 at 08:25 PM
Somehow, Reeree, I have a feeling you'd say that regardless of what this story is all about.
sara car January 06, 2014 at 02:59 AM
Were any scientific studies referenced? I would like more research information that supports their claim.
Henry Krinkle January 06, 2014 at 10:10 AM
Al Beronio, a list of Christie's accomplishments would be far easier and a much shorter one to compile. However, in the meantime, you can peruse these. Guidelines for Major Sandy Programs Not Adopted Until After Christie Administration Chose Who Got Funds Second set of documents obtained through litigation shows thousands wait listed or rejected from RREM or Resettlement Program before State adopted formal guidelines on fund distribution. http://www.nytimes.com/2013/12/17/nyregion/cornered-by-accusations-christie-parries-with-jokes-and-stonewalls-with-snarls.html?_r=0 http://www.huffingtonpost.com/2013/12/26/chris-christie-bridge_n_4504079.html?ncid=txtlnkushpmg00000037 http://www.alternet.org/tea-party-and-right/5-corrupt-things-about-new-jersey-governor-chris-christie http://open.salon.com/blog/barry60x/2012/08/28/chris_christies_trail_of_corruption http://blog.nj.com/njv_editorial_page/2014/01/attorney_general_should_defend.html
Larry Lang January 06, 2014 at 10:42 AM
Lyle LePage couldn't you come up with something a little more idiotic to say.
Tim Tucker January 06, 2014 at 10:44 AM
Welcome to Colorado!! There are people here who will line up to help your child get the medicine she needs. But a warning: You may find the people so friendly, the air so clean and our mountains so cleansing to your soul that you will never go home. This is God's Country and we have scarce time for backwards eastern politics. Welcome, enjoy and be healthy!!
Henry Krinkle January 06, 2014 at 12:22 PM
Will Chris Christie lead New Jersey to prosperity? http://www.dailyrecord.com/article/20140106/NJNEWS10/301060011/Will-Chris-Christie-lead-New-Jersey-prosperity-
Gordo K January 06, 2014 at 12:30 PM
Henry, et al: What on earth do your hate Christie diatribes have to do with this story?
Henry Krinkle January 06, 2014 at 12:57 PM
Gordo K, Christie is against the availability in NJ of medical marijuana and stands firmly in the way of those who would in all likelihood get relief from the pains of their afflictions. He has proven again and again that he is an elitist with zero compassion for the common man.
Al Beronio January 06, 2014 at 01:03 PM
Henry....give it up. Your obsession with all things Christie is getting a little old. And those web references that you gave....every one of them is an acknowledged progressive/liberal/activist website. let's try a little fair and balanced approach, shall we?
Judith January 06, 2014 at 02:39 PM
To Lyle G. LePage - the kid HAS been to doctors and the doctors agree with the parents, which is why the toddler is eligible for medical marijuana.
Lyle G. LePage January 06, 2014 at 04:15 PM
Wow! I didn't realize ol' Larry Lang & Judith would take such umbrage with my quip. I therefore wish to rescind my previous remarks. But, I certainly hope the kid doesn't inhale. That's bad for your lungs, you know.
Henry Krinkle January 06, 2014 at 04:23 PM
Sometimes the truth hurts, Al. Get used to it.
Michelle January 06, 2014 at 04:33 PM
There are way too many idiots on this thread. I am posting a link to a webpage started by the family who produce Charlotte's Web. A strain of marijuana that has proven to help children with Dravet's Syndrome when nothing else worked. Do you realize these children could have 300-500 seizures a week and traditional medicine has nothing that has helped these children. http://realmofcaringfoundation.org/ Do a little research before slamming these parents. Christie is the one who should be ashamed. Karma is a beotch.
Al Beronio January 06, 2014 at 05:28 PM
Hey, I'm all for truth, but your sources are laughable when it comes to the truth. I invite everyone who is reading this thread to go to the sources you recommend with an open mind and then make your own conclusions.
Carol Levy January 06, 2014 at 05:38 PM
In Pa. Corbett has said no to a medical marijuana bill that seems primarily aimed towards this disorder. As someone in chronic pain, disabled for over 30 years a result, with studies that show marijuana does help those in pain (and one study specifically neuropathic pain, which is what I suffer from) it is apparent these governors care more about political issues then the people of their states. The party of "fiscal responsibility" the GOP, should care if for no other reason then the use of this drug, for that is what marijuana is, might allow some of their citizens to no longer need state and federal aid but instead allow them to get back to work.
Jeremy Rapp January 06, 2014 at 09:05 PM
EPILEPSY PROHIBITION
kris zielinski January 06, 2014 at 10:50 PM
if christie is the repub's best bet. god help them. he is a total loser.
Edith Ann January 07, 2014 at 10:49 AM
Offer Christe 5 big juicy steaks and he might break a little. He don't care for no one else's suffering, all he cares about is his big gut. Maybe he'll get cancer of the gut and see what suffering is all about.
Al Beronio January 07, 2014 at 11:20 AM
Kris...I notice how Christie totally lost the last election! A few more losses like that and the Democrats are history.
Al Beronio January 07, 2014 at 11:23 AM
...and Edith Ann. You can take your place right alongside Ed Schultz of MSNBC who wanted Dick Chaney's heart ripped out of him. Such idiotic remarks do nothing to advance serious debate on the many issues facing our society these days. As Jimminy Cricket used to say, "If you can't say something nice about someone, don't say anything at all".
Carol Levy January 07, 2014 at 12:00 PM
Lucretia, There are studies upon studies that shows marijuana does have a medicinal benefit. Ask those with glaucoma, those with cancer pain, those who need appetite stimulated such as those with AIDS or cancer. The proof isavailable. If you want to know it look for the studies. Even Sanjay Gupta has changed his position on it and now sees it as having benefit. Find hi documentary weed I believe it is called where he profiles a child with this horrendous disorder and shows the outcome once she had access to the strain of marijuana necessary. You would prefer to believe the 'reefer madness' of the 50's then look at the reality as proven by science not myth, not prejudice and bias, or errant information on this drug (I wrote much earlier, a small study has proven it very effective for those with neuropathic pain but better that we remain disabled and living on not only ss disability (which we have earned through our work when we could work- but also your tax money since many of us on disability still fall well below the poverty line and therefore rely on state and federal help It is a benefit to all if those who can get help rom this drug had access to it. It would also reduce the numbers of those in chronic pain who instead have to rely on oxydodone, vicodin, etc.)

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