For Emily Klamkin, food is her enemy. A lifetime of digestive disorders means she can process very little if any food. She will need a rare and risky transplant procedure to survive.
And, within an unintended dose irony, a group of restaurants and chefs in her hometown of Flower Mound are the ones rallying to help save her life. "She was perfectly healthy when she was born," Emily's mom, Susie Klamkin said.
The problems began days later and were not fully diagnosed until she was seven years old. She suffers from mitochondrial disease and intestinal pseudo-obstruction. She lost most of her large intestine and most of her small intestine was removed as well. One-third of her stomach was removed. Chronic pancreatitis was a byproduct too. She is fed primarily intravenously with a nutritional substance.
"She will literally starve to death if we don't have a way to feed her," Susie Klamkin said. "She's very weak. She's losing a lot of weight. And her life is just very difficult with a lot of pain, a severe amount of pain."
And now, at the age of 31, a rare five-transplant procedure is the only avenue to extend and save her life.
She is a candidate for a multi-visceral transplant that will include the large and small intestines, stomach, pancreas, and liver. Her chosen specialist now works at the University of Alabama Birmingham, but her insurance company, Cigna, has so far not approved the hospital as an accredited facility. A Cigna representative, contacted by WFAA to ask about the estimated $2 million procedure, sent WFAA the following statement:
“Emily Klamkin has bravely faced a serious and debilitating illness. We are focused on helping her get access to the care she needs, at a facility that presents the best opportunity for a quality outcome.
Cigna's clinical team has been working diligently to identify an appropriate transplant program that is willing to accept a case as rare and complicated as Emily’s, and that process continues. A Cigna nurse case manager has been working closely with Emily and her family to help guide them through this process.
Some health plans, like Emily’s, call for a person to have transplant surgery at a place that participates in the Cigna LifeSource Transplant Network®. These hospitals are selected after a rigorous review and are nationally recognized for their quality of care.
While the doctors and other health care professionals at UAB Hospital provide compassionate care, its program for this rare type of transplant has not been certified by the Center for Medicare & Medicaid Services (CMS), nor has it been designated as a Cigna LifeSource Program of Excellence.
If no Cigna LifeSource Program of Excellence is willing to accept her as a patient, we will cover her medically necessary care at a hospital willing to accept her and capable of meeting her needs, such as UAB Hospital.”
Emily and Susie Klamkin’s frustration stems from the fact their chosen and trusted transplant surgeon, who formerly worked at a Cigna-approved institution, moved their practice recently to the transplant program at UAB.
But in order to be considered for the transplant, while waiting and hoping for eventual insurance company approval, Emily needs to move near UAB while waiting for a donor. To help cover those costs, the Lakeside community in Flower Mound is coming to her aid.
On Sept. 2, a group of restaurants from the Shops at Lakeside including Mio Nonno Trattoria, Hanaya, Carvao Prime Brazilian Steakhouse, Mena's Grill, Epic Gelato, and Paradise Bistro and Coffee, will take part in a Taste of Lakeside event at Circle R. Ranch in Flower Mound with the proceeds from donations and a silent auction going to Emily and her family.
"After a lifetime, you know, enough is enough," said event organizer Paula Kratohvil. "This family has had enough. And this community is known for coming together to help their own. And Lakeside really stepped up this time."
"She has been denied twice," Susie Klamkin said of the insurance issue. "We are confident they will do the honorable thing and to cover her for this life-saving transplant."
Emily was too weak and too ill to sit for an interview with us this week. But in a recent YouTube video issued to thank those reaching out to help her she talked about her hopes and dreams. "There's just endless possibilities with this transplant," she said. "And not be in pain, which is so exciting. I have a whole list of foods that I want to eat."
Emily says she dreams of something as simple as a bowl of queso: one as big as she can get.
All she needs is a recipe for a miracle - one that her community is working hard to help her find.
If you would like more information on the fundraising event and how you can help Emily visit the follwoing two links: