4-year-old with extremely rare disease gets wish to see snow - KXXV Central Texas News Now

4-year-old with extremely rare disease gets wish to see snow

She was only the tenth person documented in the world at this time with this form of mitochondrial disease (Source: KXXV) She was only the tenth person documented in the world at this time with this form of mitochondrial disease (Source: KXXV)
FORT HOOD, TX (KXXV) -

A Fort Hood Soldier has a 4-year-old daughter who fights for her life on a daily basis.

Scarlett Landry has an extremely rare condition that could take her life at any moment, but thanks to the Make-A-Wish Foundation, she is about to get the experience of a life time.

Scarlett, now four years old, has had nearly 50 surgeries to keep her alive.

She has a condition that doctors couldn't diagnose until she had a bad reaction to Propofol, a typically safe anesthesia.

"Come to find out, when she went to see a metabolic doctor, that that is a big warning sign of mitochondria disease," Terrin Barker-Thomas, Scarlett's mother, said.  

But, it took about a year to truly diagnose Scarlett because until that time, her condition, Ying Yang 1, wasn't fully recognized. 

"She was only the tenth person documented in the world at this time with this form of mitochondrial disease," Barker-Thomas added.

"Her diagnosis is one that the powerhouse, the mitochondria, the powerhouse of the cell, they have to have that instant glucose to turn it to ATP for basic cellular function. She has too many chromosomes and her mitochondria can't do that. So, we, from the outside world, have to manage that for her," Susan Schenck, Scarlett's primary nurse, said.     

"She's not physically capable of taking in enough calories to sustain her body," Barker-Thomas said. 

So, Scarlett snacks constantly and relies on a feeding tube at night to keep her blood sugar levels high enough.

"I check that machine probably 400 times in a 10-hour shift," Schenck added.  

Scarlett has a nurse with her -day and night - for about 84 hours each week.

Due to her condition, Scarlett tires extremely fast and hasn't been on a vacation other than to visit family.

However, the Make-A-Wish foundation is about to grant her something she didn't think was possible - to see snow.

Scarlett and her family will spend a week in Breckenridge, CO to see snow, build a snowman, have snowball fights and go to an adaptive ski school.

Scarlett's parents' promised their daughter to "add life to her days, not days to her life" because of her rare disease. 

"What's the point of having her live longer, if she doesn't ever get to experience joy?" her mother added. 

Last Thursday, Scarlett was surprised with another wish granted - to be a firefighter for a day. Thanks to the Fort Hood Fire Department, that came true. 

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