University of Colorado Denver | Anschutz Medical Campus

The Barbara Davis Center for Diabetes is one of the largest diabetes programs specializing in Type 1 diabetes research and care for both children and adults in the world.

 

It had just relocated from the old health sciences campus on Ninth Avenue to the new Anschutz Medical Campus when Ellie arrived on its doorstep. The staff taught Ellie’s mom how to poke her daughter’s finger every two hours, around the clock, night and day to check blood glucose and how to manage her daughter’s insulin with shots.

 

“You walk out of the center, and it’s almost like you have a newborn again,” said White. “I was terrified, thinking ‘Can I make a mistake and give her too much insulin? Could I accidentally kill my own daughter?’”

 

White instinctively approached Ellie’s disease like the scientist she is. A molecular biologist, she has worked for the CU School of Medicine in the laboratory of Tom Campbell, MD, Division of Infectious Diseases since 1995. After Ellie was diagnosed, White started researching Type 1 diabetes and began lobbying Klingensmith to place Ellie on an insulin pump hoping that the pump would extend the “honeymoon period” when her own cells were still making insulin. Together, the mother and the physician worked as a team to make decisions for Ellie.

 

“Dr. Klingensmith is amazing,” said White. “She is so warm, so helpful, and what truly shocked me is that she gave us her home number and her pager number, so that if we needed anything, day or night, we could call her. What doctor does that?”

 

As Ellie developed into a bright, charming child, the family’s life became centered around the Anschutz Medical Campus. It was the place where Ellie got treatment and where her mother continued her career. It was also the place where scientists were researching Type 1 diabetes. Tests showed that Ellie had two protective genes, meaning she should not have developed Type 1 diabetes. “I was thinking, ‘There is something else going on here,’” said White. “I think the doctors thought I was in denial, but really, as a scientist, I just wanted to get to the bottom of it.”

 

So White approached three notable Type 1 diabetes researchers at the Barbara Davis Center: Peter Chase, MD; Peter Gottlieb, MD, and George Eisenbarth, MD, PhD, who served as director of the Barbara Davis Center for Diabetes until he passed away on November 13, 2012. Every time she “got some crazy idea,” Beth White would send the researchers an email, often wondering if they thought she “would pester them to the end of the earth.”

 

“But all of them were open to my ideas,” said White. “What I heard them say was ‘Yes, there is something going on, but we may not get an answer in Ellie’s lifetime, because there are still unknowables.’”

 

When Ellie was seven, she had a routine eye exam at the Barbara Davis Center with Brian Bucca, OD. Bucca was unable to correct her vision to 20/20. Additional tests revealed that Ellie was color blind. Bucca immediately sent her to Dr. Jeffrey Bennett, MD, PHD, a neuro-ophthalmologist at the Rocky Mountain Lions Eye Insitute, also located on the Anschutz Medical Campus.

 

Bennett examined Ellie and recommended further tests. “I remember him saying ‘It could be this, or it could be that,’” said White. “And then he said ‘There is one thing it could be, and we don’t want it to be that.’”

 

A couple weeks later, Klingensmith called Beth White in for “a talk.”

 

“I remember that she walked into the room and looked at us,” said White. “She started crying. We started crying. She was there to tell us that Ellie had Wolfram Syndrome.”

 

Wolfram Syndrome is named after Don J. Wolfram, MD, the first physician to describe the disease in four siblings in 1938. All the children had diabetes and had lost their vision and hearing. Eventually, the disease leads to brain stem atrophy and death.

 

Wolfram Syndrome occurs when both parents are carrying one bad gene and their child gets copies of both genes. The chances of that happening are about one in 1 million.

 

When Ellie was diagnosed, she was the only person with Wolfram Syndrome in Colorado.

 

One of the mutations in her genetic structure had never been seen before. Never.

 

“It was not fair,” her mother said. “It was horrible, it was devastating.”

 

Beth White now had what she wanted: a scientist’s explanation for Ellie’s illness. But she could not bring herself to tell her only daughter. Ellie had singlehandedly raised $30,000 for juvenile diabetes research, motivated by one goal—to find a cure. “How could I tell her that, even if they do find a cure for Type 1 diabetes, it’s not going to help her?” asked White.

 

Then, in 2010, when Ellie was nine, her dance group, the Silhouettes, was invited to perform on “America’s Got Talent.” The director of the dance studio approached Beth White with an idea: why not use Ellie’s appearance on national television as an opportunity to tell the world what Wolfram Syndrome is?

 

Beth White knew the idea would appeal to Ellie. The time had come to tell her that she did not just have diabetes. “I told her the name of the disease, I told her it was extremely rare and I told her what might happen to her,” said White. “But I also told her that we don’t know for sure what will happen.”

 

The Silhouettes placed second in “America’s Got Talent” sixth season, but Ellie, the smallest girl in the group,  placed first in the hearts of viewers across the country.

 

On a Monday evening in early November, you can find Ellie at dance class.  She may be petite for her age, but she is still a big sister to two onlookers, eight-year-old Ryan and 15-month-old Matthew. Ask Ellie about Wolfram Syndrome, and she will talk about the “positive sides” of having the disease. “I have learned a lot about my body,” she said. “It’s also fun to educate other people.”

 

Ellie is the subject of a documentary film-in-progess, {www.goelliego.com} and she has continued raising money with her own foundation {www.elliewhitefoundation.org}.  “I want to find a cure for Wolfram,” she explained. “With the money that’s left over [after we find a cure], I want to find a cure for all childhood diseases.”

 

If a positive attitude could cure Wolfram Syndrome, Ellie would be disease-free. “I’m sad [about having Wolfram Syndrome], but I don’t let it ruin my life,” said Ellie.

 

Ellie sounds older than her 11 years when she talks about how her mother has dealt with everything. “I think she has handled it pretty well,” Ellie said.

 

“I think [Ellie] pretends,” Beth White said. “She puts on a brave face and smiles and says ‘This is my life and this is how it will go for me.’ I know that she is scared, because at night in bed when we are praying, I know how deeply it touches her.”

 

Beth White continues to apply her scientist’s instincts to Ellie’s disease. Most recently, she has received help from Charles Dinarello, MD, an internationally renowned investigator in the field of cytokines who does research in the Division of Infectious Diseases on the Anschutz Medical Campus.

 

“He has taken us under his wing,” said White. “He brainstorms, thinks outside the box to help Ellie, and to help me.” Dinarello has also been helpful to White in the development of Ellie’s foundation.

 

Eight years after Ellie’s pediatrician told Beth White to be prepared to spend several days at the Barbara Davis Center, Ellie continues to receive care there. “They care about Ellie, they care about our family,” said White. “Now, more than ever, they do things above and beyond the call of duty.”

 

Note:  George Eisenbarth, MD, PhD, one of the researchers who worked with the White family and director of the Barbara Davis Center for Diabetes, passed away on November 13, 2012. He had received the Banting Medal, which is the highest honor bestowed by the American Diabetes Association, for a lifetime of achievement in research.

 

Published: November 19, 2012

Contact: stories@ucdenver.edu 

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