Minnesota News

Minn. lawmaker proposes 'Super Gav Act' in honor of Winona boy

4-year-old Gavin Quimby has Metachromatic Leukodystrophy, a rare brain disease

'Super Gav Act' Created

ST. PAUL, Minn. (WKBT) - Minnesota State Senator Jeremy Miller sponsored and proposed the "Super Gav Act" in honor of a four-year-old boy who was diagnosed with Metachromatic Leukodystrophy, a rare brain disease.

You may remember Gavin Quimby from his work as "Super Gav" who saved the City of Winona in June 2014.

Senator Miller told News 8 he was approached by Gavin's family about the possibility of adding Leukodystrophy to the newborn screening list in Minnesota. He met with the Minnesota Department of Health and drafted a bill, the "Super Gav Act," that would add a list of six Leukodystrophy disorders to the screening list in the state.

"I'm very happy to sponsor the Super Gav Act," Senator Miller said. "Gavin is an extremely brave and strong young man and I continue to be inspired by the Quimby family and I'm willing to do anything I can to help raise awareness about Leukodystrophies and ultimately to help find a cure and do whatever we can to help fight this devastating disease."

Besides introducing the Super Gav Act to start the legislative process, Senator Miller is also working with the Minnesota Department of Health's advisory committee on newborn screenings. The advisory committee will meet on April 21 to hear from the Quimby family and discuss adding the disorders to the newborn screening list.

"We are going to see what happens at the April 21 meeting for the advisory committee and then we will reevaluate at that point if we want to continue with the advisory path or continue to pursue the legislative path," Senator Miller said.

Senator Miller lives near the Quimbys and he has seen what Gavin has been going through.

"He is an extremely tough and brave little guy," Senator Miller said. "He has been through a lot over the last year-and-a-half. And for anyone, regardless of age, to go through what he has, you have to be a very strong-willed individual and Gavin has gone through more in the last year-and-a-half medically than most of us go through in a lifetime. He and his family continue to be an inspiration to me."

Senator Miller and the Quimby family have also been working with the Hunter's Hope Foundation. It's based in New York and was founded by NFL Hall-of-Fame quarterback for the Buffalo Bills Jim Kelly. He started the foundation in memory of his son Hunter who was diagnosed with a form of Leukodystrophy.

Below you can watch the video "Super Gav, Gavin saves Winona MLD," which was shot in June 2014 and shown for the first time at a benefit for Gavin in July 2014.  Updates on Super Gav are posted on the 'Gavin flying for a cure' Facebook page.

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