Pubdate: Fri, 28 Feb 2014 Source: Trentonian, The (NJ) Copyright: 2014 The Trentonian Contact: http://www.trentonian.com Details: http://www.mapinc.org/media/1006 Author: Sherrina V Navani PARENTS RALLY AT STATEHOUSE TO CLEAR RED TAPE ON MEDICAL MARIJUANA FOR KIDS TRENTON - On Thursday, just steps away from Gov. Chris Christie's Statehouse office, a slew of desperate and distraught parents begged the administration to re-evaluate the stringent guidelines of the state's current medical marijuana law to help get the medicine their suffering children need to live a better life. "My daughter died because she didn't have a chance," said Phil Joana, whose 15-month-old daughter, Sabina Rose, died in December after suffering a 24hour Tonic clonic seizure. The baby was diagnosed with Drevet Syndrome and was in arduous process of obtaining a state issued Medical Marijuana Card when she passed away. "She only celebrated one birthday, one time putting her feet in the water and only one Christmas." In December, Christie signed bill S2842 to allow an edible strain of medical cannabis to be given to minors. However he's not willing to expand the state's program to include adults, leaving preteen and teens venerable to being phased out of the program and not able to get the "pot" they need to stay alive. Additionally, supporters of the medical marijuana program cite the extensive amount of paperwork, doctor referrals, physiological analysis and limited dispensaries, under the current program, that makes getting the medication their children need, virtually impossible. One parent even noted the high price of purchasing the medical marijuana, an excess of $550 for one treatment for her epileptic daughter. The patient was charged tax, despite it being a prescribed substance. Assemblywoman Linda Stender (D22) hosted the press event and talked about legislation which could legally allow New Jersey Medical Marijuana patients to obtain forms of pot not sold in the state from other states with medical marijuana programs. Bill A-1374 would make it easier for registered sick patients to get the pot by creating a reciprocity rule to access the relief they need while New Jersey's guidelines are re-evaluated. "We have a law but we need to make sure it works," said Stender. "It's kind of like a tossed salad of things and we need to make sure we create a law that helps, not further hurt, these patients." Parents of children who have been lucky enough to get the proper medicine spoke of the massive improvements to their child's medical condition. After using all prescribed forms of narcotic epileptic medication, parents like Jennie Stormes said her 14-year-old son, Jackson, has lived seizure free for 101 days, thanks to the medical cannabis. "We are not for legalization of pot, that is not what we are saying," said Joana after he wiped tears away from his swollen eyes. "If we can legalize Percocet, which is made from an opium plant for pain relief, why can't we legalized the one medicine that really works and can help save kids' lives ... pot works." - --- MAP posted-by: Jay Bergstrom