SMOKINCHOICES (and other musings)

October 23, 2008

Twinkle, Twinkle, Little “Star”

Filed under: Uncategorized — Jan Turner @ 9:20 am
Tags: , ,

This miraculous young lady, Shelly Navarre of Upper Arlington,  has stopped me in my tracks this morning as I read about her in my morning paper – the Columbus Dispatch.  My analytic mental processes were numbed to stillness as I absorbed the story of her birth, life and physiological problems.  That she has endured in tact, retaining all her pieces and parts is frankly, amazing!  And yet she endures, persists and somehow thrives with a grateful heart, competitive spirit and flat-out amazing attitude and grit.

That she was tube-fed for over two years because she could not endure the trauma of suckling at breast or bottle is clue number one that her immune system never had a chance to get started, let alone survive undamaged.  Perhaps the EB (recessive dystrophic epidermolysis bullosa – a rare skin condition) is a primary indication that the immune system was flawed before birth because of this condition which is a genetic condition which they say runs in the family.  Infection has been a threat every day in her 16 years.

One wonders if the inner ecology of her body could be rebuilt to allow her normal body function to come alive and start battling for survival (which is it’s normal function).  The body’s own resources is always what does the healing when disease is conquered.

Science has done amazing things for Shelly allowing her to have a life, to participate fully, to be somebody, yea, to even excell.  I salute you Shelly Navarre.  You are an inspiration for others to be able to remember what humans are made of and the possibilities which lie at our core.   I shall envision you as radiant, healthy and happy – you have already nailed successful!

From the Columbus Dispatch:

Fragile infant grows into one tough distance runner

UA athlete doesn’t let skin disorder stop her

By Steve Blackledge
THE COLUMBUS DISPATCH


Just call her a running irony: Shelly Navarre nearly lost a leg as a newborn and suffers from asthma, but she has developed into one of the top competitors on one of the best cross-country teams in central Ohio.
The Upper Arlington sophomore was born with a rare skin condition called recessive dystrophic epidermolysis bull
osa, which causes severe blistering. She has smiled through the pain and procedures associated with the disease.
“There are a lot of people out there worse off than me,” said the soft-spoken Navarre. “My skin is just more fragile than other peoples’. I’m pretty much used to it now. Hardly anyone even notices the skin grafts unless I point them out.”
Upper Arlington coach Dale Hartney has
taken notice of Navarre’s ability and determination, wrapped in a 5-foot-1, 98-pound package. “She’s one of the quietest, nicest, happiest, most personable kids I’ve ever been around,” Hartney said, “but underneath that facade is an unbelievably remarkable little competitor. It wouldn’t surprise me if all the stuff she’s been through in some way has toughened her up.”
Navarre had anything but a normal infancy. The lifethreatening, dystrophic form of EB, as the disease is commonly called, left her with no skin on her left leg. In her first week, synthetic membranes resembling artificial skin were grafted from her thigh to her toes to stimulate skin growth.
“Initially, the biggest worry for us was that they might have to amputate her leg due
to the threat of infection,” said her mother, Bonnie Navarre. “We prayed and prayed that her leg would be saved.”
Blistered too severely to nurse or suck on a bottle, Navarre was fed through tubes in her nose until she was 2. Doctors placed an IV containing fluid and pain medication in her scalp.
The defining characteristic of EB is recurrent blistering resulting from any kind of friction, abrasion or trauma. Scarring occurs at the deepest level of the tissue, even internally.
“I can’t even imagine the pain Shelly went through,” Bonnie Navarre said. “It is supposed to have the same sensation as a third-degree burn.”
EB is diagnosed in 50 people per 1 million, and of that 50, 1 percent inherit the dystrophic form. Both of Navarre’s parents carry the recessive gene that causes the
disease. Shelly’s two brothers, Peter, 21, and Chris, 17, also have EB but suffer milder effects. A sister, Katie, 20, was spared.
“I doubt that Shelly remembers much of what she went through,” Bonnie Navarre said. “As a parent, one of the things you look forward to the most is watching your kids learn to crawl. With Shelly, she kind of dragged her one leg behind. You felt bad for her, but she has always been very, very determined and adapted very well. As the youngest of four siblings, she has never let her size and condition get in the way.”
Although her first year was the scariest, Navarre, 16, continues to deal with problems
stemming from EB.
She loses fingernails and toenails more frequently than others. Vaseline is an invaluable staple. She wears a sturdy pair of socks to reduce blistering on her feet.
Occasional scarring in the esophagus is especially problematic and can cause her to choke on food or drink. Every few years, most recently in August, Navarre has undergone an intrusive procedure to stretch her esophagus.
None of this, however, has slowed down Navarre, who took third in a career-best 18 minutes, 49.13 seconds for 5,000 meters in helping the Golden Bears capture a Division I district title on Saturday at Watkins Memorial. They
are ranked third in the state coaches’ poll.
UA advanced to regional competition Saturday at Pickerington North.
Navarre placed 28th in the state (19:01.84) as a freshman.
Navarre, who also suffers from a mild form of asthma, shrugs off the effect that EB has on her athletic career (she also runs track and plays basketball for UA) or life in general.
Hartney, who has coached UA track and cross country for 44 years, was taken aback when Bonnie Navarre apprised him of her daughter’s background.
“That whole storyline about her struggles in early life might help, in part, to explain who Shelly is and why she does everything to the fullest,” he said. “This disease might have slowed down her development, but it certainly didn’t affect her heart.”
sblackledge@dispatch.com


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