UPDATE; Local woman beats rare disease, now on mission to save others
UPDATE: 10-month-old Mabry Kate who suffered from Krabbe disease has passed away. Her family tells Channel-3 Mabry died Saturday. Funeral arrangements are made through Mynatt Funeral Home in Knoxville. _______________________________________________________________________________________________________
“It's been a roller coaster ride the past 20 years," said Scarlett Roberson Measles.
Scarlett's story dates back to the late 90's, when she was first diagnosed with adult onset Krabbe disease.
Her insurance companies denied a bone marrow transplant. After Channel 3 investigated in 1998, the insurance companies changed their minds. That transplant saved her life.
"The disease that I had been told was gonna take my life in five to ten years had been stopped," said Scarlett.
It was a life changing moment for her, she had beaten the disease. But the she realized that so many others hadn't been as lucky.
"Through the years you deal with that. You ask yourself why did I survive and my friend didn't?" said Scarlett. "The answer to that is I am supposed to be the voice for these kids, and I am."
Kids with the same disease, suffer a worse fate.
"Once the symptoms begin to show, it's too late," said Scarlett.
Progression of the disease in infants can't be stopped once symptoms start, giving newborns a shorten life.
So far only New York and Missouri screen for Krabbe disease at birth. A few other states are on their way to screening laws. Scarlett and her friend, Phil May have tried for 3 years to get a bill passed in Tennessee with no luck.
"Because they were not screened at birth, they are dying," said Scarlett.
10-month-old Mabry Kate is proof. She was diagnosed with Krabbe at three months old. It was too late for a cord blood transplant and she now she only has a short time to live. Scarlett hopes this little girl's fight will make a difference.
"Surely to goodness when they look into the eyes of a child that they could have saved, surely to goodness this is going to open their eyes," said Scarlett.
Mabry Kate's struggle will save another life; her un-born brother has the disease.
"Because her parents knew about the disease, because of that he is going to get the chance to live a healthy life," said Scarlett.
Something Scarlett wants for every child and she hopes legislators will make that happen this time.
"I don't plan to ever give up for these kids, I owe it to them to save them," said Scarlett.
House Bill 33 and Senate Bill 44 now have backing in both the House and the Senate.
Scarlett says she is confident going into this session and this year they're dedicating the bill in honor of Mabry Kate.
If you would like more information on Krabbe disease, click here.
To send a pre-written letter straight to the TN Government for Scarlett's cause, click here.
Friday, January 19 2018 10:49 AM EST2018-01-19 15:49:19 GMT
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