Jo Anne Embleton
Jacksonville Daily Progress
Proceeds from a benefit barrel race event Saturday at the Christ Cowboy Church Arena will help pay for medical expenses incurred by Tiffany Wolven, born two years ago with three rare genetic disorders that have resulted in multiple surgeries on her head and stomach.
“Run for Hope” exhibitions begins at 10 a.m. and continue through noon. The Open 4-D barrels begin at noon run on 1/2,1/2,1 splits. The 3-D and youth poles will follow the barrel events, said her mother, Tammy Wolven.
Entry fees are $5 per exhibition, or three for $13.
Tiffany Reann Wolven was born premature on Nov. 27, 2010, at Texas Children's Hospital in Houston, where she spent the first four months of her life in the hospital's NICU.
Because her skull didn't form properly during gestation, a portion of her brain and spinal fluid protruded through the hole, forming a skin-covered cyst on the back of her head that measured 4- by 2-inches at the base of her skull.
The tyke also was diagnosed with Arnold Chari III malformations, which affects the cerebellum in the infant's brain and affects balance, her mother Tammy said.
Tiffany also has Meckle Grubber Syndrome, a rare, fatal, genetic disease that causes cysts to form on the kidneys and lungs; cerebral ventriculomegaly, or an enlargement of the lateral brain ventricles; tethered cord, which causes tissue to form on the spinal cord, limiting movement; an elongated spine, and a small hole in her heart where the third ventricle did not form properly.
She also has a severe acid reflux disorder, which causes seizures, her mother said.
The toddler has had eight surgeries – six on her stomach, two on her brain – since her birth, the earliest one at age 10 weeks to remove the protrusion at the base of her skull, the most recent on Nov. 5 at the Houston hospital to implant a feeding tube that allows Tiffany to be nourished through her stomach or intestine, Tammy said.
Despite these daunting medical problems, and associated developmental delays, Tiffany “is very happy,” her mother said.
“Even when she was having all of the vomiting and retching, she was very playful. (But) that makes it a challenge (for doctors) to realize that there is something seriously wrong with the child because she's so happy.”
The feeding tube has alleviated the worst of the violent vomiting, allowing the toddler's stomach to rest and recuperate, Tammy said.
“She has nerve damage to her stomach, which can take 2-3 years to heal, so the gagging and retching aggravates that damage, and we have to give her pain medicine while she has her attacks. But at least with J-feed (tube), we're able to get more calories down her and she's started picking up weight – she weighed 19 pounds 9 ounces at her last doctor visit,” Tammy said. “And now she is getting strength and energy to do more things.”
Young Tiffany faces more surgeries – including eye surgery at the end of February, based on results of tests that are scheduled right after Christmas at Texas Children's Hospital – “but we've been blessed,” her mother said.
“She has beaten more odds than (one) can count. She's truly the good Lord's miracle ... she keeps knocking down the doors and beating the odds.
“She's still got a lot of struggles to go through, but slowly, she's getting better,” Tammy said. “We're taking baby steps, but at least we're going in the right direction.
An account has been set up under the name Tiffany Wolven at Austin Bank for anyone wishing to make a donation to the the family help with her care and the family's travel expenses.
For more information about Saturday's roping event, contact Tammy Wolven, 903-952-5391 or 903-330-0686, or Stacy Wolf, 903-
Or email Wolven at email@example.com, or Wolf, firstname.lastname@example.org.