Amazing Gracie: Girl defies long odds

Mother credits hyperbaric oxygen therapy for daughter’s progress

BY SUSAN JENKS
FLORIDA TODAY

Shannon Kenitz missed her daughter’s first steps, which took place at school earlier this year — two days shy of her seventh birthday.

Ever since then, Gracie — who suffers from an extremely rare genetic disease that starves her brain and muscles of oxygen — not only walks, she tears around nonstop, her flowered sandals clacking behind her.

“At age 3, she was blind, she was on a feeding tube, and she was taking 42 medications,” her mother said. “The doctors told us: ‘Let her die.’ ”

Today, Gracie attends a mainstream public school, has close to 20/20 vision, speaks about 50 words and no longer takes any anti-seizure drugs, according to her mother, who credits hyperbaric oxygen therapy for the dramatic turnaround in her medical condition.

Shannon Kenitz was in Melbourne on Wednesday with her daughter to tell “Gracie’s story,” already featured on several national television shows, and to raise funds for the nonprofit International Hyperbarics Association, located outside Los Angeles. She is the foundation’s executive director.

Hyperbaric oxygen therapy, which involves the use of 100 percent oxygen in a pressurized chamber, is widely used to treat radiation-associated injuries; deep non-healing wounds; bone infections; and deep-sea divers’ decompression sickness, known as the bends.

But the use of this therapy for neuromuscular disorders, such as the one Gracie had, still is viewed by many doctors as alternative therapy, even though a number of independent centers, including Dr. Jeffrey Bradstreet’s International Child Development Resource Center in Melbourne, do use it “off-label,” or outside its government-approved use.

In Gracie’s case, Bradstreet said, “we are not able to undo her genetic defect,” called Mitochondrial Cytochrome C-Reductase, an enzyme deficiency leading to oxygen deprivation in the mitochondria, the energy producers of all the body’s cells.

But Gracie has “shown way more improvement than we thought possible,” he said, because of her daily, one-hour hyperbaric oxygen treatments, which are delivered at an atmospheric pressure roughly equivalent to being 23 feet below sea level.

“And she’s alive,” he said, considered quite a feat, given the rarity of the condition and the fact it is viewed as a terminal disease.

Bradstreet said he knows of five children diagnosed with this particular genetic defect in the United States — and the other four children have died.
Dr. Paul Buza, a Melbourne neurologist who runs Wuesthoff Health System’s Wound Care and Hypberbaric Center, said hyperbaric oxygen therapies have begun moving into neurologic applications nationwide, including in Bradstreet’s area of expertise, autism, a spectrum of illnesses associated with developmental delays.

“There is a growing body of evidence suggesting there may be a benefit,” Buza said.

“And why not try it in Gracie’s case?” he asked, referring to the hyperbaric oxygen treatments in this particular situation. “The disease is so rare and the prognosis so poor, while hyperbaric oxygen therapy is so safe. You have nothing to lose.”

David Bass, the coordinator for the hyperbaric department at the University of Florida, agreed.

He said hyperbaric oxygen treatments for Gracie make sense because “her body is not able to convert oxygen to energy,” so it is being starved and forced to shut down.

But with hyperbaric oxygen and “the way it works,” he said, “oxygen is forced into the plasma carrying the red blood cells and into the interstitial tissues,” so it can reach every area of the body.

As for Gracie’s mother, she has few doubts the therapy eventually will emerge as a mainstream treatment.

“It’s not widely accepted yet, but I think it will be,” she said.

And, while she waits, Shannon Kenitz helped bring a hyperbaric center to Madison, Wis., where she and Gracie live, with a healthy 9-year-old sibling, Lilly.

Although that eliminates the need to travel to Melbourne for these treatments, she said, she plans to keep traveling to Bradstreet’s office for chelation therapy for Gracie’s autism, which was diagnosed two years ago. Chelation therapy is another alternative treatment, in which heavy metals are removed from the blood.

“What keeps me going is I remember Gracie in a vegetative state,” she said. “And I do have faith, in the sense I have hope. Without it, you don’t have anything.”

Contact Jenks at 242-3657 or sjenks@flatoday.net.