Tuesday, August 2, 2011
DALLAS -- Like many other 3-year-olds, Gracie Straus has pigtails, a favorite toy (Woody from the "Toy Story" movies), a favorite color (pink), and a happy smile.
She's also braved a daunting amount of medical issues so far in her short life.
Just looking at her, you wouldn't know it. She's as playful, joyful and chatty as you would expect for a healthy child her age.
But Gracie has never known what it means to be healthy.
Before she was born, doctors discovered Gracie had a growth. It turned out to be an ovarian cyst so large it had attached itself to her vital organs. Gracie's mother, Mandy Straus, said the condition is so rare that there were only 20 other documented cases.
"It was a normal pregnancy right up until the end," Straus said last week.
Doctors ordered a caesarean section and, a few weeks later, surgery to remove the cyst. Surgeons had to remove Gracie's ovary, Fallopian tube and part of her small intestine.
"At the time, they thought that was the end of it," Straus said.
Instead, that proved to be just the beginning.
Gracie has since suffered a stroke and has been diagnosed with a number of other genetic, developmental and nerve disorders.
Gracie takes multiple medications and has a nerve implant to control epilepsy, which had caused several seizures a week. Cerebral palsy affects her legs, making it difficult to stand or walk for long periods of time. Spina bifida, undiagnosed for years, will leave her incontinent. She also has Smith-Magenis syndrome, a developmental disorder causing intellectual disability, speech delays and sleep disturbances.
Last week, when Gracie and her mother were enjoying a morning at home, the only indication of the 3-year-old's medical issues was the braces on her lower legs. They didn't seem to slow her down. She climbed on and off the couch and pushed Woody in her stroller.
The quiet scene isn't as typical as it should be.
"We rarely have a day when we are just home," Straus said.
Gracie goes to Doernbecher Children's Hospital at Portland's Oregon Health & Science University three times weekly for physical, speech, occupational and sensory integration therapy, in additional to a weekly bladder scan, regular checkups and further testing.
Straus said Gracie, naturally, has developed relationships with the doctors and nurses who provide her care. She has even nicknamed one "Dr. Grandpa." Straus said her daughter, the second of three girls in the family, faces her unusual childhood bravely, never once crying while having an IV put in or getting a shot.
"She's been a blessing," Straus said. "She's been a trooper."
Gracie's father, John, works for the Marion County Sheriff's Office and insurance covers much of Gracie's treatment, but not all. Her therapy sessions are partially covered, as are prescriptions, and doctor visits require a copay.
That doesn't stop her family from providing Gracie with every opportunity to beat the odds of her prognosis with extensive therapy.
"She faces a lot of challenges," Mandy Straus said. "We try to give her the best shot in meeting her full potential."
The expense of Gracie's care is pushing the Dallas family into debt.
This Friday, organizers of the Night of Fire car cruise-in are asking the community to help Gracie and her family.
Each year organizers of Night of Fire and The Winter Rod & Speed Show donate proceeds from the events to needy families.
Gracie was nominated by a family friend and organizers immediately knew they had found the right family.
"They are not crying, blaming or pointing the finger at anyone," said cruise-in coordinator Lee Morgan of HIS Ride Ministry. "They think everyday is a blessing from the Lord and go from there."
Morgan said in an effort to cultivate community support, he asks the family to assemble a team to gather donations for the cruise-in's silent auction. Straus said in the weeks since her family was chosen for the benefit, her family has been able to amass four large boxes -- and counting -- of items from Dallas businesses to put in the auction. The community's support is not surprising to the family. They have been the beneficiary of several helping hands since Gracie was born, Straus said.
Morgan expects to see a wide range of vehicles at the cruise-in -- from antiques, to rat rods, to muscle cars -- and an equal variety in the spectators.
"You'll have tattoos next to ties standing together talking about the vehicle in front of them," Morgan said.
For the youngsters, there will be a carnival area with games, a rock climbing wall and bouncy houses. Plenty of food vendors, who will also donate proceeds to Gracie, will be there as well.
The earthshaking grand finale will feature several flame-shooting drag cars firing up all at once.
"With that much horsepower, you can feel your innards shake," Morgan said.
Gracie and her family will be there to enjoy it all.
Straus said with all that has happened in Gracie's short life so far, her family has learned to embrace all moments, big and small, with Gracie.
"We don't know what 10 years from now will look like for her," she said. "We have definitely learned to cherish each day."
How You Can Help Gracie
Night of Fire Benefit Show cruise-in
Friday, Aug. 5, from noon to 10 p.m.
Salem Evangelical Church, 455 Locust St. NE, Salem.
Ed "Outlaw" Jones will be part of the drag fire-up finale. Adam's Rib Smokehouse, Keizer Cream Treats and DaJoys Kettle Corn will be selling food at the event.
Admission is free to the public, but Night of Fire will also be collecting nonperishable food items for Marion-Polk Food Share during the show.
To follow Gracie's story, go to www.caringbridge.com/visit/GracieStraus.
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