ETX mom: Tiffany has 'courage beyond her years' - WAFF-TV: News, Weather and Sports for Huntsville, AL

ETX mom: Tiffany has 'courage beyond her years'

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FLINT, TX (KLTV) -

One East Texas family is asking for your help to raise funds for their two-year-old daughter's medical treatments.

TIffany Wolven of Flint has a rare genetic disorder that has caused her to have multiple surgeries on her brain and stomach, and her parents Michael and Tammy Wolven are organizing next weekend's "Run for Hope" benefit barrel race for a girl they say has a tremendous fight to live.

"We spend every precious minute that we have with her and enjoy her because we know in our reality that it can be taken away from us very quickly," said Tammy.

Tiffany Wolven was born with an occipital encephalocele in November 2010 - she had a hole in her skull and part of her brain was intruding. She was diagnosed with a genetic disorder called Arnold Chari III malformation, and her parents say her day to day life since then has been a challenge.

"At ten weeks old she had her first brain surgery," Tammy said. "She spent the first four months of her life in the NICU down at Texas Children's Hospital in Houston."

Tammy says Tiffany was doing well until coming down with a respiratory infection in January 2012 that caused her to stop eating. What she did eat, she would throw up - to the point that she's had several major stomach operations and requires around-the-clock care.

"Right now we've been told that if they don't get this retching and vomiting under control with her that she might not make it to her fourth birthday," said Tammy.

Even though the Wolvens have health insurance and Tiffany is on Medicaid, there are a lot of out-of-pocket expenses - one genetic test Tiffany recently needed wasn't covered by insurance and cost $20,000, and travel back and forth to her doctors in Houston several times a month has wiped the family's savings.

Still, the Wolvens have hope that Tiffany's health will improve.

"She has more courage beyond her years than any of us could ever imagine," Tammy said. "That little girl just keeps fighting and has a strong will to live."

The Run for Hope benefit barrel race will be Saturday, January 19, at the Tyler Riding Club in Mount Selma. There will be spots for exhibition, as well as barrel and pole racing. There will also be a silent auction and other items for sale to benefit the Wolven family. The event is free to attend.

If you'd like to participate, the exhibition portion starts at 10 a.m. It costs $5 per entry or $12 for three entries. The open portion starts at 12 p.m. Barrel racing will be $30 for adults and $20 for youth and pole racing will be $20 for adults and $15 for youth.

Contact Tammy Wolven at 903-707-3942 or 903-952-5391 for more information.

The Wolvens also have a benefit fund for Tiffany's medical expenses established at all Austin Bank locations.

All proceeds will go to benefit the Wolven family.

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