Posted 12:19 am Sunday, December 16, 2012
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Wolven benefit rescheduled for January 12
BY KELLY GOOCH
kgooch@tylerpaper.com
A Run For Hope Benefit Barrel Race for a 2-year-old East Texas girl has been rescheduled.
kgooch@tylerpaper.com
A Run For Hope Benefit Barrel Race for a 2-year-old East Texas girl has been rescheduled.
The benefit, which was designed to help the family of Tiffany Wolven, a girl with multiple genetic disorders, was postponed Saturday morning because of wet conditions in the arena.
“It just made the pen extremely wet. It was just a safety hazard to the horses and riders,” said Tammy Wolven, Tiffany's mother.
Still, she thanked everyone who showed up Saturday morning.
The benefit was rescheduled for Jan. 12 at Branded by Christ Cowboy Church arena off Texas Highway 110 in Rusk, with exhibitions starting at 10 a.m. followed by the open at noon.
Mrs. Wolven said they are still planning for the event and have a lot of nice silent auction items. There also are prizes, including trophy halters for reserve champions in open divisions and buckles for winners of open division. Proceeds will help with the family's medical and transportation costs.
In the meantime, Mrs. Wolven and her husband Michael are tending to Tiffany. Wolven said they have to give her extra medicine to get her where she can eat.
“When our days are good, they're good. When they're bad, they're bad,” Wolven said.
Her next hospital visit will be the week of Christmas.
Tiffany was born with a skin-covered cyst on the back of her head, which was repaired at 10 weeks old, and was diagnosed with several rare genetic diseases: Arnold-Chiari type III, which affects her bone structure; Meckel-Gruber syndrome, which affects her lungs and kidneys; and Sandifer's syndrome, which causes seizures. She also has a movement disorder.
Still, she thanked everyone who showed up Saturday morning.
The benefit was rescheduled for Jan. 12 at Branded by Christ Cowboy Church arena off Texas Highway 110 in Rusk, with exhibitions starting at 10 a.m. followed by the open at noon.
Mrs. Wolven said they are still planning for the event and have a lot of nice silent auction items. There also are prizes, including trophy halters for reserve champions in open divisions and buckles for winners of open division. Proceeds will help with the family's medical and transportation costs.
In the meantime, Mrs. Wolven and her husband Michael are tending to Tiffany. Wolven said they have to give her extra medicine to get her where she can eat.
“When our days are good, they're good. When they're bad, they're bad,” Wolven said.
Her next hospital visit will be the week of Christmas.
Tiffany was born with a skin-covered cyst on the back of her head, which was repaired at 10 weeks old, and was diagnosed with several rare genetic diseases: Arnold-Chiari type III, which affects her bone structure; Meckel-Gruber syndrome, which affects her lungs and kidneys; and Sandifer's syndrome, which causes seizures. She also has a movement disorder.
She is listed as day-to-day, meaning she could die at any moment. If her retching does not get under control, she isn't expected to make it to her fourth birthday.
“She has severe gagging and retching. She'll do it so violently, it will kick her into seizures, so we have to be careful how we feed her and the times of day we feed her,” Mrs. Wolven said last month.
For more information about the benefit for Tiffany, contact Tammy Wolven at 903-952-5391 or at txnbhabarrelracer@yahoo.com. Donations also can be made at Austin Bank.
The road that she and her husband have walked began when Mrs. Wolven was pregnant.
Everything looked typical on her 14-week ultrasound, but she became fatigued in the following weeks, she has said. She went to the emergency room and the doctors did blood work. She was sent home but received a call the next day, when she learned that a spot on the baby's head looked “suspicious.”
At one point, the Wolvens said two doctors told the couple their daughter was terminal, that the pregnancy would be toxic to Mrs. Wolven, and the best thing to do was have an abortion.
“It was devastating,” Mrs. Wolven said in November.
Her husband has said, “It was hard. You don't know what to do, where to go or who to turn to.”
Mrs. Wolven's first doctor dropped her, and she was denied an abortion because of potential complications, she has said. The couple ended up going to a women's clinic in Shreveport, La., and almost went to Canada to have the procedure, which doctors recommended.
“She has severe gagging and retching. She'll do it so violently, it will kick her into seizures, so we have to be careful how we feed her and the times of day we feed her,” Mrs. Wolven said last month.
For more information about the benefit for Tiffany, contact Tammy Wolven at 903-952-5391 or at txnbhabarrelracer@yahoo.com. Donations also can be made at Austin Bank.
The road that she and her husband have walked began when Mrs. Wolven was pregnant.
Everything looked typical on her 14-week ultrasound, but she became fatigued in the following weeks, she has said. She went to the emergency room and the doctors did blood work. She was sent home but received a call the next day, when she learned that a spot on the baby's head looked “suspicious.”
At one point, the Wolvens said two doctors told the couple their daughter was terminal, that the pregnancy would be toxic to Mrs. Wolven, and the best thing to do was have an abortion.
“It was devastating,” Mrs. Wolven said in November.
Her husband has said, “It was hard. You don't know what to do, where to go or who to turn to.”
Mrs. Wolven's first doctor dropped her, and she was denied an abortion because of potential complications, she has said. The couple ended up going to a women's clinic in Shreveport, La., and almost went to Canada to have the procedure, which doctors recommended.
But Mrs. Wolven said she called her insurance company, and a representative stayed on the phone with her for hours trying to help.
She ended up going to a doctor in Houston, who did testing that other doctors didn't.
After the tests, she has said the doctor indicated things weren't as bad as she was told: A small portion of Tiffany's brain was still herniated, but it could be repaired.
So she has said she and her husband decided to give Tiffany a chance.
Mrs. Wolven traveled to Houston every three weeks toward the end of the pregnancy. Tiffany was scheduled to be delivered on Dec. 8.
However, days after Thanksgiving, Mrs. Wolven had eclampsia — a life-threatening condition for pregnant women — and had to be flown by helicopter to Houston.
Her husband didn't arrive until after Tiffany was born, and Mrs. Wolven, a diabetic, was in the intensive care unit for days.
Today, the couple travels to a Houston hospital with their daughter every month.
During a recent visit, she was supposed to be in the hospital for three days, but it turned into nine because of her feeding problems.
Tiffany has two ports for her nutrition — one into her stomach and another into her intestines. She also has to battle epilepsy and sleep apnea on top of her feeding problems and genetic disorders, her mother has said.
For Tiffany's father, a typical day begins at midnight when his wife comes to bed. He stays up all night with his daughter because of her movement disorder, which can force her into seizures. He works at the Skyview-Hodge prison unit in Rusk.
She ended up going to a doctor in Houston, who did testing that other doctors didn't.
After the tests, she has said the doctor indicated things weren't as bad as she was told: A small portion of Tiffany's brain was still herniated, but it could be repaired.
So she has said she and her husband decided to give Tiffany a chance.
Mrs. Wolven traveled to Houston every three weeks toward the end of the pregnancy. Tiffany was scheduled to be delivered on Dec. 8.
However, days after Thanksgiving, Mrs. Wolven had eclampsia — a life-threatening condition for pregnant women — and had to be flown by helicopter to Houston.
Her husband didn't arrive until after Tiffany was born, and Mrs. Wolven, a diabetic, was in the intensive care unit for days.
Today, the couple travels to a Houston hospital with their daughter every month.
During a recent visit, she was supposed to be in the hospital for three days, but it turned into nine because of her feeding problems.
Tiffany has two ports for her nutrition — one into her stomach and another into her intestines. She also has to battle epilepsy and sleep apnea on top of her feeding problems and genetic disorders, her mother has said.
For Tiffany's father, a typical day begins at midnight when his wife comes to bed. He stays up all night with his daughter because of her movement disorder, which can force her into seizures. He works at the Skyview-Hodge prison unit in Rusk.
Mrs. Wolven, who is disabled, has had to have multiple back surgeries and a radical hysterectomy, among other things.
She is at her Flint home with Tiffany almost all the time because of complications with her daughter's conditions.
“You have to live in the everyday moment-to-moment, because one minute you can have her, (and) the next minute she can succumb to complications,” Mrs. Wolven said last month.
Her husband agreed, saying, “You just get up and you deal with it. You put one foot in front of the other. You don't have time to cry or boohoo about it. ... I could, but what good will it do me or my wife?”
The couple, married more than four years, typically does not get to take their daughter out of the house or do much with her because of her conditions. With her feeding schedule, she only has a three-hour window to do anything during the day, Mrs. Wolven has said.
Tiffany must be hooked to a feeding pump for more than an hour during the day.
At night, she has to be hooked up to a feeding pump continuously for 12 hours.
And death could come at any moment.
“She could be playing and have a seizure and be gone like that,” Wolven has said.
It's a fact the father knows all too well.
She is at her Flint home with Tiffany almost all the time because of complications with her daughter's conditions.
“You have to live in the everyday moment-to-moment, because one minute you can have her, (and) the next minute she can succumb to complications,” Mrs. Wolven said last month.
Her husband agreed, saying, “You just get up and you deal with it. You put one foot in front of the other. You don't have time to cry or boohoo about it. ... I could, but what good will it do me or my wife?”
The couple, married more than four years, typically does not get to take their daughter out of the house or do much with her because of her conditions. With her feeding schedule, she only has a three-hour window to do anything during the day, Mrs. Wolven has said.
Tiffany must be hooked to a feeding pump for more than an hour during the day.
At night, she has to be hooked up to a feeding pump continuously for 12 hours.
And death could come at any moment.
“She could be playing and have a seizure and be gone like that,” Wolven has said.
It's a fact the father knows all too well.
In May, Tiffany was playing and then suddenly needed resuscitation. It took about half an hour to save her.
But throughout the challenges, they have learned much.
“I've learned to really persevere and appreciate each day I have with her and know that I am truly blessed because she is a miracle, and fighting for her ... was the right thing to do, because I treasure every moment that I have with her,” Mrs. Wolven said in November.
She said her experience with her daughter also has brought her closer to her faith and helped her become stronger as a person.
Wolven has said he realizes he and his wife are lucky because they see many children come into the hospital in bad condition and with no parents.
“I know it could be so much worse yet so much better,” Wolven has said, adding that other fathers have cried on his arms.
He added, “The fact that she's already died on me once — how do you fathom that? You don't.”
The couple has said their intention with their story is to give people a glimpse of hope and a reason to fight for their child.
“You have to put in that fight and that try and give it that chance, and she's living proof of that,” Mrs. Wolven has said.
But throughout the challenges, they have learned much.
“I've learned to really persevere and appreciate each day I have with her and know that I am truly blessed because she is a miracle, and fighting for her ... was the right thing to do, because I treasure every moment that I have with her,” Mrs. Wolven said in November.
She said her experience with her daughter also has brought her closer to her faith and helped her become stronger as a person.
Wolven has said he realizes he and his wife are lucky because they see many children come into the hospital in bad condition and with no parents.
“I know it could be so much worse yet so much better,” Wolven has said, adding that other fathers have cried on his arms.
He added, “The fact that she's already died on me once — how do you fathom that? You don't.”
The couple has said their intention with their story is to give people a glimpse of hope and a reason to fight for their child.
“You have to put in that fight and that try and give it that chance, and she's living proof of that,” Mrs. Wolven has said.
