World’s youngest biker chick ready to ride By DANI BYER
Reporter/Photographer She’s a sweet little 2 year old with bows in her hair and great big smile. She has a precious laugh and a caring family.
She’s also got a leather jacket.
On June 13, Torah Hull will turn into biker-for-a-day, donning that leather jacket to follow a crowd of motorists around Wyoming to participate in the 8th Annual Robert Uttenhove Memorial Benefit Poker Run presented by Untamed Spirits. Torah, this year’s poker run child, was born with CNS dysgenesis, a medical problem which involves the incorrect development of the brain.
“Her ventricles are about three times the size they should be,” described Torah’s mother Kelly. She explained there is no empty space in the brain because the ventricles are simply replacing parts which failed to develop. CNS dysgenesis is a practically unknown medical condition, and Torah really has “no diagnosis.” Doctors assured Hull that nothing she did during pregnancy caused the condition and, thus far, Hull confirmed that they had found “nothing in the DNA” to explain what went wrong. The couple noted Torah was born early, causing additional complications with her colon.
Every six months, Bob and Kelly Hull, along with their 3-year-old son Jace, load up with Torah for a family road trip. However, unlike most family road trips, this one doesn’t end at a vacation hotspot. Instead, the family’s destination is the Denver Children’s Hospital. The Hulls sees neurologists, GI doctors and orthopedic specialists to make sure that everything is functioning as it should be. Aside from the bi-annual trips to Denver, Torah also visits therapists in Douglas three times a week where she works on her motor skills and building her strength. As of now, Torah has no balance and cannot sit or crawl. The Hulls are hoping that with therapy these skills will develop.
“(We are) crazy with doctors, (but) we deal with it,” Kelly said.
The family has had some pretty nerve-wracking health scares in the past two years. Last year, Torah was rushed to Denver three times, once for a seizure, once for a perforated bowel, and once for internal bleeding. The 2 year old also suffers from ulcers. According to Bob, the couple’s goal for this year is “no more airplane rides,” in reference to Flight for Life.
While little is known about CNS dysgenesis, the little material that can be found often describes a fatal prognosis. Thankfully, Kelly said that nothing about Torah’s case points to fatality and the couple should be able to enjoy their little girl for years and years to come. The Hulls have just received word that Torah has been accepted for a medical waiver from the state of Wyoming, which will help to provide the couple with a respite system. They have had difficulties getting monetary assistance in the past because Bob makes too much for most programs. The new waiver looks not at Bob’s wages, but instead at Torah’s personal case.
Kelly said this one is “just about her.”
Bob works at North Antelope Rochelle Mine, which allows Kelly to be a stay-at-home mom for the couple’s two – soon to be three - children.
The couple plans to use the funds raised during the poker run to help pay for Denver expenses and supplies for Torah. The couple admits that a lot the equipment that Torah needs, such as a chair that enables her to sit on her own, is borrowed. With the money that is raised this weekend, the couple will hopefully be able to purchase some of the necessities. Torah is growing quickly and the Hulls hope to obtain a shower chair and a wheelchair that will fit her size.
The Robert Uttenhove Memorial Benefit Poker Run was started eight years ago by the Untamed Spirits Motorcycle Club Founder and President Terry Uttenhove.
“I started it in memory of my son. He loved children, and what better way to keep his name alive than doing a poker run for sick kids,” Terry said. Robert Uttenhove was killed in a motorcycle accident in 1996.
To select recipients for poker run funding, members of Untamed Spirits approach families in the community who have a child with an illness to see if they would be interested in filling out an application. Applications are reviewed and voted on by the club in order to select the youth who will be the face of the year’s poker run fliers.
Registration for the poker run is June 13 from 7:30-11 a.m., beginning at Speedway Superstop. After paying $15 for a hand, participants will jump on their bikes, or in other vehicles if they so choose, and venture to Glendo, Wheatland, Guernsey, Torrington and Lusk, picking up a card at each stop. The poker runners will meet back in Douglas at Washington Park by 5 p.m. to draw the final card. Participants will make a hand from the top five of their seven cards and a prize of $500 will be awarded to the winner. The winner of the low hand will receive $100.
Aside from the poker hand winnings, numerous prizes will be raffled. Tickets are being sold for a dollar a piece or six for $5 and grand prizes include a 42” television and a $500 shopping spree to Douglas Hardware Hank.
On Saturday, as community members race around the state, they will not only be enjoying a game of poker, but will be helping to care for one of Douglas’ own. If you are lucky enough to see this crowd race by, keep your eyes peeled. You just might see the cutest biker-chick in town. |
