Mother fights to save son from life-threatening seizures

CREATED Mar 28, 2014

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MILWAUKEE - A Madison family is back in the spotlight. We first met 6-year-old Nic Volker 3 and a half years ago. Nic was the first patient ever to have all of his genes sequenced, so doctors could learn more about his mysterious intestinal illness.
His mom Amylynne recalls, "It was a life or death situation almost every day, for several years."
Doctors found the mutated gene, and treated Nic for his illness by doing a bone marrow transplant.
Now Nic is 9-years-old, and his family is dealing with a new challenge--a horrible seizure disorder, not uncommon for kids who get bone marrow transplants.
"The quality of life has gone down quite a bit. He's not able to participate in after school sports," Amylynne explains.
Medication is no longer working. Amylynne believes his last hope is CBD oil, a derivative of medical marijuana, that's currently illegal in Wisconsin. "It's very frustrating that we're defined by a zipcode.
That kids in some zipcodes can get that medication, and we can't get it here."
Lawmaker support is mounting as a bill moves through the legislature that would legalize the oil. State Rep. Scott Krug (R-Nekoosa) said in a past story, "This is a very targeted bill for CBD oil and children with seizure disorders."
Opponents, who have not been vocal, argue that Wisconsin should wait for the FDA to approve the treatment. But for Amylynne, and many other Wisconsin parents dealing with similar disorders, time is of the essence. "It's very scary.. and like I said, just one seizure can be fatal."
The bill unanimously passed the Assembly last week. Supporters are now trying to get a vote on the Senate floor before this year's legislative session closes Tuesday.