Pubdate: Sun, 06 Oct 2013
Source: Buffalo News (NY)
Copyright: 2013 The Buffalo News
Contact: http://drugsense.org/url/GXIzebQL
Website: http://www.buffalonews.com/
Details: http://www.mapinc.org/media/61
Author: Wendy Conte
Note: Wendy Conte, a licensed veterinary technician, resides in 
Orange with her husband and three children.
Page: H4

STATE SHOULD LEGALIZE MEDICAL MARIJUANA

Medical marijuana gives us hope that our child will not have to 
suffer the violence of daily epileptic attacks.

If you're like most parents, you don't look forward to the day that 
your child first tries marijuana. But I do. My daughter Anna is not 
like most 8-year-olds. Before her first birthday, she was diagnosed 
with Dravet syndrome, an intractable form of epilepsy, and after 
years of battling the condition together we think medical marijuana 
may be one of our last hopes to alleviate her suffering.

Anna's condition has led us to Women and Children's Hospital of 
Buffalo more than 70 times, with hospitalizations sometimes lasting 
three months. Despite trying every anti-epileptic medication, diet 
and supplement prescribed by her team of neurologists, Anna still has 
daily seizures.

Her seizures last up to three hours at a time, a terrifying 
experience for any parent to witness and certainly more painful for 
Anna to suffer through. When the rescue medications she's prescribed 
fail, paramedics transport her to the emergency room where she is 
anesthetized to break the seizure. Anna's immune system is weakened 
by all the anti-epileptic medications, which leads to a vicious cycle 
of more seizures and more emergency room visits.

The toll on our family is devastating physically, emotionally and 
financially. In the month of June alone, we know of four children 
with Dravet's who lost their lives due to epilepsy-related 
conditions. We fear that will be Anna's fate if her seizures are not 
controlled.

The cost is significant. After exhausting medication options in the 
United States, we began importing different drugs from Europe. (At 
first we bore the burden of the imported medications, but now at 
least Anna receives assistance through New York's Medicaid program). 
The cost of hospitalizations has run into the hundreds of thousands of dollars.

Several weeks ago, I watched a CNN documentary about medical 
marijuana hosted by a former skeptic, chief medical correspondent Dr. 
Sanjay Gupta. He profiled a little girl with Dravet's. Charlotte 
lives in Colorado, a state that allows legal access to medical 
marijuana for seriously ill adults and children, and her parents have 
reduced or eliminated many of her medications as she experienced a 
marked decline in seizures after using medical marijuana.

Recently New Jersey Gov. Chris Christie expanded access to medical 
marijuana in that state in part to respond to pleas from parents who 
needed access for their severely ill children. Across the country, 20 
states and the District of Columbia have approved medical marijuana 
programs for people who have a serious illness or disability. I don't 
feel I should have to uproot my family to get proper access to 
medications for Anna, but that's the reality I face because my 
child's life is at stake.

I'm shocked, saddened and disappointed that families like ours are 
made to wait any longer for a therapy that has proven successful in 
other states. Medical marijuana gives us hope that our child will not 
have to suffer the violence of daily epileptic attacks and countless 
side effects from medications that offer her little respite.

I urge the governor and our state legislators to prioritize the 
Compassionate Care Act, a bill that would provide safe and legal 
access to medical marijuana for New Yorkers with serious and 
debilitating illness. Otherwise, the state threatens to make a 
criminal out of me, my family and our little girl as we fight for Anna's life.
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MAP posted-by: Jay Bergstrom