Family fights Medicaid for medical marijuana to save daughter’s life

Abby Muszynski, the 5-year-old daughter of Rich and Kim Muszynski, suffers from grand mal seizures. Her parents say that they can always tell when a seizure is about to start; her pupils enlarge, and she’ll seem to fixate on something in the distance that only she can see. And then her extremities will start to shake, and she gasps for air.

By the tender age of 3, Abby had already tried eight different anti-seizure medications, but none of them worked very well. Pained by the fact that their daughter’s condition only continued to worsen, the Muszynskis drove three hours to Orlando to visit Dr. Ngoc Minh Le, a board-certified pediatric neurologist and epileptologist.

Dr. Le told them that there was a very slim chance that any other anti-seizure medication would yield better results for Abby. He suggested that Abby be treated with medical marijuana. Just months before Dr. Le’s recommendation, Florida’s Governor Rick Scott had legalized the use of a specific strain of non-euphoric cannabis known as Charlotte’s Web.

Charlotte’s Web had been a miracle treatment for a little girl with Dravet syndrome named Charlotte Figi. Figi had been suffering with up to 300 grand mal seizures per week, and her parents were running out of options. Charlotte had even lost the ability to walk, talk or eat. At the age of 5, doctors told the family that there was nothing more that they could do for her.  And then, medical marijuana entered the picture. Though she was the youngest patient in the state of Colorado to apply for it, eventually her family found two doctors to approve it.

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After giving their child the high-CBD cannabis oil, the Figis noticed an immediate improvement. Charlotte went an entire week without having a single seizure, something that hadn’t happened in a very long time. Just two doses of cannabis oil a day have kept her seizures at bay. Her story has inspired many other successes.

But, Charlotte’s Web didn’t work so well for Abby Muszynski. It helped, yes, but not as much as it helped Charlotte. Abby, unfortunately, was still having about two grand mal seizures every week. Dr. Le explained to the Muszynski family that Charlotte’s Web has a very low THC content, and suggested that a higher THC strain might be what’s best for Abby.

However, at that point in time, marijuana with a higher THC content wasn’t legally available for Abby – at least not in Florida. If they wanted to get it, the family would have to move and leave behind their friends and family, including two older children. Colorado seemed like it might be their best option; Kim had spoken to some parents with disabled children there, and they told her that the state had a fair and efficient Medicaid program.

But getting Abby to Colorado was going to be problematic. Her condition was so severe that doctors felt it wouldn’t be safe for her to fly. Long car rides were also out of the question. And so, the Muszynskis began their final fight with the state of Florida.

Kim began speaking with Medicaid officials in Florida about obtaining an air ambulance for Abby so that she could be moved safely. After speaking to and emailing with officials, it seemed that everything was going to go according to plan. They sold their home, and husband Rich went out to Colorado. Kim and Abby stayed behind to wait for their transport. After several days without confirmation, Kim Muszynski began writing emails to Florida officials begging for help – and eventually, she enlisted CNN reporter Elizabeth Cohen. Five days after their planned departure date, Kim and Abby finally received their air ambulance transport.

Rich welcomed his family home when they arrived in Colorado Springs, and within just a few weeks, miracles began to happen. The high-THC content cannabis stopped Abby’s seizures almost completely. Abby was having 2 to 4 seizures a week in Florida, and they lasted up to 12 minutes each. Now, Abby only experiences seizures about once  a week – and they only last a few seconds. Her mother Kim says that just a drop of cannabis oil under her tongue stops a seizure almost immediately.

And now that Abby is free of seizures, she is slowly making progress. Her parents hope that one day she may even be able to learn rudimentary sign language so that she can communicate.

This is what the call for the  legalization of marijuana is all about.

Sources:

Edition.CNN.com

Edition.CNN.com