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Amelia Weaver of Hibbing suffers from Dravet syndrome, a rare and catastophic form of epilepsy. (Submitted photo)

A mother's view: Dayton favors special interests over special needs on medical marijuana

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opinion Duluth,Minnesota 55802 http://www.duluthnewstribune.com/sites/default/files/styles/square_300/public/field/image/editpg0325AmeliaWeaver.jpg?itok=rs1E5Mh7
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A mother's view: Dayton favors special interests over special needs on medical marijuana
Duluth Minnesota 424 W. First St. 55802

Last Thursday, I was invited by Gov. Mark Dayton’s staff to discuss the medical marijuana bill. Gov. Dayton proposed a clinical study at the Mayo Clinic. It was with a heavy heart that I listened to his proposal. The governor has failed to work for a real solution, and I can’t understand how he is still putting special interests above special needs. Gov. Dayton said his proposal of a $2.2 million study on an extract of cannabis for certain patients with seizures is something law enforcement would be able to help get passed.

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Three other parents of children who suffer from seizures and I told his staff this was not acceptable.

We voiced our concerns that this study would take years to implement, would need to wait for federal approval and that half the children would be on placebos.

The governor’s proposal will not help my daughter, Amelia. My family will still have to move to a state where Amelia can have safe, legal access to medicine that will change her life. I refuse to wait years while my daughter suffers to get the lifesaving medicine she needs.

Amelia — and thousands of other patients who could benefit from medical cannabis for seizures and other devastating conditions — deserve a comprehensive medical cannabis bill like the ones that are working in 20 other states and the District of Columbia, not merely a promise to study an extract that researchers in Minnesota do not have access to and in which only a fraction of the state’s seizure patients would be able to participate.

If a comprehensive bill also includes a study, that’d be fantastic. But a study cannot happen without access to medical cannabis. A study is no substitute for a program that lets patients throughout the state access life-saving medicine now.

No one should have to suffer the way Amelia has every day for the past five years. My oldest daughter, she was born in 2006, filling our lives with so much love, fun and excitement. At 2½, she was walking, talking in sentences, singing her alphabet and counting to 20. My husband went to check on Amelia one morning and found her having a seizure in her crib.

By the time we got her to the hospital she had suffered three more seizures. They sedated her to the point that she stopped seizing. I vividly remember standing over her hospital bed, watching her face turn blue and her entire body convulse from the seizure. To go from one day having your child singing the ABC’s in the bathtub to the next with her not being able to get out of a hospital bed is an indescribable agony.

Amelia has lost the ability to talk, walk and feed herself. She has been on more than 23 anti-epileptic medications. She has had more than 1,000 seizures. I stay at home to provide Amelia with the full-time care she needs. Amelia has been diagnosed with Dravet syndrome, a rare and catastrophic form of epilepsy. She is now having 30 or more seizures a day.

More than four years after Amelia began suffering from repeated seizures, we learned that medical cannabis has allowed children in other states to dramatically reduce the number of seizures they have and to walk, talk and experience joy once again. If I could hear Amelia say “Mommy” again it would be the best day of my life. The hope that medical cannabis might reduce my daughter’s number of seizures and increase her quality of life brought me to the state Capitol for the first time in my life this legislative session. How could I not go? It is my job, and the most important mission I have, to make sure my daughter can live the healthiest and happiest life possible.

Taking care of our state’s most vulnerable children and adults is Gov. Dayton’s and our Legislature’s job. I implore them to give Amelia a chance to sing, walk and laugh with her sister right here in the state that’s home to our family, our church and our community.

Angie Weaver lives in Hibbing.

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