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Sunday, 26 September 2021

Victory For Violet

Credit: WAAY ABC Huntsville, AL
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Victory For Violet
Victory For Violet

WAAY-31's Pat Simon introduces us to an Alabama family who is finally getting answers for their child, Violet.

We're connecting north alabama with stories about the good works of the region's non-profit organizations.

Waay 31's pat simon introduces us to an alabama family who is finally getting answers for their child - violet.

It's thanks to your generosity that allows for some incredible research that's happening right here in huntsville.

Dan .

Tonight - unraveling the mystery of rare genetic disorders through one family's experience.

They are looking for answers for their young daughter ... and they're hoping for a "victory for violet."

Nats meet violet monson ... when she was perfectly healthy.

Nats rocking along with that big smile.

Music and then ... out of nowhere ... her behavior changed.

Her mom mandy, started noticing something was wrong.

Mandy monson violet's mom she really just felt almost like a ragdoll.

Violet became weak.

She didn't make much of an effort to move ... or later even speak.

Mandy monson we were terrified.

Mandy took violet in for what she first hoped would be a routine checkup ... but got no answers.

Her doctor though did confirm mandy's original gut instinct.

Mandy monson there was something there that we needed to pursue further testing to see what might be going on.

Their doctor suggested violet undergo dna testing - at the hudson alpha institute for biotechnology.

Dr. greg cooper essentially what we're looking for is kinda a needle in a haystack.

Two shot doctor greg cooper is an investigator at hudson alpha who specializes in genome sequencing.

Dr. greg cooper we do a lot of research on trying to understand ways that our genes shape our health in particular the health of children.

Tests on violet were done ... and five months later ... the monsons returned to hudson alpha for their daughter's diagnosis.

Mandy monson we expected at that appointment that we would feel relieved.

They were told violet had rett syndrome.

A rare genetic mutation affecting brain development in girls.

After getting the news, matt and mandy remember the long, heartbreaking drive home.

Matt monson violet's father when we put the car in park in the driveway my wife looked at me and said ok we've given ourselves the time to cry and breakdown and now we fight back.

And they're now able to fight thjs disease that's taken over their child only after getting answers from hudson alpha, and because of that, many doors have opened in how they provide proper care for violet.

Mandy monson we were able to get accommodations and supports for her and we were able to get her a communication device.

Now she communicates with her eyes.

Violet is also undergoing gene therapy at the mkment and clinical trials for treatment are hopeful.

Its now become a victory for violet ... and hundreds of other girls just like her.

Dr. greg cooper it's only one part of the journey for the family, but it's good that we can make that one little step a little bit easier.

That's why fundraising events like the upcoming double helix dash are so important to the future of hudson alpha - and their mission and research ... finding critical answers for families like the monson's matt monson the people at hudson alpha and the work they're doing is life changing and it will change your life but it will also change your child's life for the better <ps tag the waay 31 team is joining others for this year's 10th anniversary hudson alpha double helix dash benefitting childhood genetic disorders.

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It's virtual again this year because of covid.

It's starts april 6 and goes through the 20th.

So lace up your running or your walking shoes and sign up for this important fundraiser.

You'll find a link to sign up ...