Extreme Makeover of special interest to local family

By Michelle Mann
Ledger Staff Writer
On ABC’s “Extreme Makeover: Home Edition” tonight, the featured family is combatting Combined Immune Deficiency Disease. In the Zion Chapel community, the Napper family will watch with special interest because their 12-year-old, Holli, is battling the same life-threatening disease.
The Emmy Award-winning television reality program, now in its sixth season, will feature a family from Las Vegas and focus on their coping with Combined Immune Deficiency Disease (CIDD),
“It’s one of the more severe types of the 150 different Primary Immunodeficiency Diseases,” Holli’s mother, Jane, said. “Approximately a quarter of a million Americans are diagnosed with PIDD.”
Napper said she hopes the television episode, which airs from 7 tol 8 p.m. CST on ABC, will raise public awareness about PIDD.
Twelve-year-old Holli wasn’t diagnosed with CIDD until 2006, Napper said. “This diagnosis came after almost eight years of battling sinus infections, ear infections, bronchitis and severe colds.”
Her mother said Holli averaged a doctor’s visit three to four times a month. “She’s endured numerous tests along with two sinus surgeries, insertion of ear tubes, an adenoidectomy and a tonsillectomy; all before the age of 7.” Holli was also on antibiotics for most of each month, especially in the winter, she said.
Finally, through a blood test, it was discovered that Holli’s immune system was not working correctly. “She has all the major components; they just don’t combine to create an immune system,” Napper said
Holli has had a port implanted to receive the monthly Intravenous Immune Globulin infusion she has needed for more thanr three years, her mother said, adding her family feels “so blessed” that people have donated the plasma needed. “If I could encourage anything, it would be that everyone donate blood whenever possible.”
“Our family is an example of just how important it is to give blood without hesitation,” she said. “When you donate blood, you can’t begin to imagine how many lives will be changed, and to what capacity. Without a volunteer to donate blood, Holli would be fighting impossible odds every day.”
She has high praise for the Coffee County Home Health Department and home health nurse, Wendy Burnett, whom she called “a Godsend.”
“We know that Wendy is a true miracle in our lives,” said Napper. “She provides a wonderful love and tenderness that goes above and beyond the call of duty.”
In this country, Napper said, there are approximately 250,000 people diagnosed with PIDD. “And thousands more go undetected,” she said. “People with PIDD are more susceptible to infections, endure recurrent health problems and often developing serious and debilitating illnesses,” Napper said. “But with early diagnosis and appropriate therapies, many patients can live healthy and productive lives. Although some PIDDs manifest themselves in infancy or early childhood, some forms can occur at any age.
The Immune Deficiency Foundation, a national patient organizations dedicated to improving quality of life for persons with PIDD, is currently conducting a “Think Zebra” campaign, said Napper. “In medical school, many doctors learn the saying, ‘when you hear hoof beats, think horses, not zebras,’” she said. “Most physicians are taught to focus on the likeliest possibilities when making a diagnosis, not the unusual ones.”
“But sometimes physicians need to look for a zebra,” Napper said. “PIDD patients are the zebras of the medical world.”
And that’s what she hopes viewers will learn when they watch “Extreme Makeover. Home Edition” tonight.