Posted on 07/30/2014 4:02:34 AM PDT by Wolfie
Funeral today for 9-year-old girl waiting on medical marijuana
WEST SENECA, N.Y. -- Friends, family and community members crowded into a church in West Seneca Wednesday morning to say final farewells to a little girl whose story touched all of Western New York.
For more than 8 months, 2 On Your Side has been following the journey of 9-year-old Anna Conte.
Anna had Dravet Syndrome, which caused her to have uncontrollable seizures.
Anna and her family were relentless in pressuring state leaders to pass a medical marijuana program, because a special oil-based version of cannabis worked wonders for kids in other states where it was legal.
Finally, the state legislature passed a bill and Governor Andrew Cuomo signed it into law. However, at the governor's insistence, the State Health Department has 18 months or longer to get the program up and running.
That proved to be too long for little Anna. Earlier this month, a seizure put her in a coma, and she never recovered.
A fund has been set up in Anna's memory. You can donate to the "For the Love of Anna Needs Fund" at any M&T Bank branch in WNY.
The Conte's and other families continue to press the state to expedite access for medical marijuana for children who need it.
Christine Emerson's little girl Julia also has Dravet Syndrome. They were at Anna's funeral.
"The service was beautiful, and it was a great representation of who Anna was," Christine said. "Just full of life."
Christine has a simple message to Governor Cuomo.
"Flat out, it's just not good enough," Christine said. "It's not good enough, and if this were his loved one, I'm pretty sure that he would make a different decision. Our kids deserve better."
It's not, and this is one of many conditions which have unfortunately been
latched onto for the purpose of legalizing POT.
It's a disgrace that the POTheads will use the suffering
of children to push their disgusting agenda of legalizing Drugs.
Wrong. You may be thinking of Marinol (synthetic THC) - not the same thing.
_______________________________________________________________
"As of late February 2014, according to the Stanleys Realm of Caring Foundation, 187 pediatric and 27 adult patients with epilepsy are taking Charlottes Web. There is an extensive waiting list."
http://www.epilepsycolorado.org/index.php?s=12108
________________________________________________________________
A number of posters on this thread owe the girl's family an apology.
________________________________________________________________
Early results are promising, but more research is needed (and it is happening).
The Realm of Caring Foundation reports that, among the initial cohort of 27 children with epilepsy who received Charlottes Web, 23 (85%) experienced a reduction of 50% or more in seizure frequency.
Margaret Gedde, MD, who has seen in her clinical practice many of the children taking Charlottes Web, estimates that overall one-quarter of children with epilepsy have had dramatic improvement after taking Charlottes Web and about another 50 percent have had some improvement.
Doctors in Colorado and researchers at Stanford University have collected summaries of patient histories suggesting positive impact of CBD in children with epilepsy.
However, these reports are anecdotal; no rigorous clinical trials of either medication have been completed yet.
Thanks for the clarification.
The girl’s mother visited CO in March and
A) Became a resident
B) Got an apartment
C) Got on the CDB-Oil waiting list.
The plan was to for the mother and daughter to move to CO when they’re name came up on the waiting list. The father would joint them later.
But, really, Ken, do you think any of these people really care?
Good call.
Who said cure? These kids go from hundreds of grand mal siezures a week down to a few. Something all of the prescription meds they’ve been taking has been unable to do. I know you don’t care, but don’t pretend you don’t understand.
Ok, so what is the prescription drug that contains a CBD extract? Who makes it? Where is it available? Come on, you know, so please enlighten me.
2. suggesting positive impact
3. these reports are anecdotal
anikˈdōtl
adjective: anecdotal
(of an account) not necessarily true or reliable, because
based on personal accounts rather than facts or research.
There is no basis of truth behind POT helping. Other medications
were being prescribed at the same time. Are you willing to torture these
people to promote your agenda based on "an·ec·do·tal" evidence by refusing
them medical treatment, but instead just giving them POT-oil?
Because in order for you POTheads to prove your agenda you will need
to torture these people by removing their medication for at least a clinical trial.
This condition has ups and downs, good days and bad, but you POTheads pick the good
days and start spouting your POThead agenda while ignoring the bad days.
It's not up to me to prove you wrong, it's up to you for proof of the claims
which I might remind you, do not exist.
Well, at least you’re being reasonable. Have a nice day.
I agree that is why I don't use them. I also think facial tatoos and piercings are for loosers. Although, I don't think we should make them illegal.
When our Lord designed this place he was brilliant enough to make all stupid decisions come with their own built in penalties.
You want to do drugs? - Have a lower standard of living, poorer health and rockier relationships than you otherwise would have.
Get facial tatoos? - Have everyone think you are weird and loose out on jobs, friends, acquaintances that you could otherwise have.
Where we get into trouble is when we try to help people avoid the negative consequences of their bad choices through free health care, discrimination laws, welfare, social services for addicts, AIDS research, etc...
I don't think the little girl who died was going to use recreational drugs. She was trying to get medication derived from marijuana. Only a statist would make a sick little girl or anyone else PROVE to their own satisfaction that a drug they wanted to injest to help stop seizures was effective before they used it.
We don't need DEA, FDA, or USDA nazis in FreeRepublic.
Could the parents have moved to a state that allows such treatments?
I would have moved to the ends of the earth and done what ever I had to keep my kid alive
Just saying.
See post #63.
Rather than ridicule and take snipey shots at pot, some posters may want to do a little more research on the actual ingredients being talked about..
but that would be asking for some to think before posting.
If she were my kid and that oil was the only thing that could have saved her she would have had that oil. That level of dependence on a government is a bad thing.
Epidiolex
Disclaimer: Opinions posted on Free Republic are those of the individual posters and do not necessarily represent the opinion of Free Republic or its management. All materials posted herein are protected by copyright law and the exemption for fair use of copyrighted works.