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Plight draws attention to rare disease

“Hypothalamic obesity” is a neurological disorder as obscure as it sounds, but it’s now gaining national attention thanks to two former Sonorans and their daughter.

Alexis Shapiro, 12, and her parents, Ian and Jennifer, now of Cibolo, Texas, were featured on national TV news programs this week as a result of a battle with their health insurer that’s prevented them from getting Alexis what could be a life-saving gastric bypass surgery.

 

Alexis Shapiro’s disorder, diagnosed at the age of 9, is the result of a brain tumor called a “craniopharyngioma,” affecting about 1 person in a million. It has damaged a region in the center of her brain that regulates basic tasks like eating and sleeping. 

As a result, the child has an insatiable appetite and has gained a life-threatening amount of weight.

Her parents, Air Force retiree Ian Shapiro and Jennifer Shapiro (nee Dambacher), have been attempting to get the girl gastric bypass surgery to help her lose the weight. Their health insurer, TRICARE and Humana Military, however, has declined their request saying she is too young. 

Jennifer Shapiro told reporters at the time, “She desperately needs this. I feel like she will die if she does not get this surgery.”

Their insurance plight was picked up by NBC online and subsequently was broadcast nationally on “The Today Show” and a Fox News channel. 

Various news websites have picked up the story too.

The result has been an outpouring of financial and moral support.

Since Saturday, the family has received more than $70,000 in donations. This overcomes the first financial hurdle of $50,000 for direct surgical costs, according to Shapiro’s aunt, Jessica Shapiro, of Sonora. 

She said Jennifer Shapiro got on the phone Monday to try to begin setting up the surgery. 

Most of the donations have been $5 to $50, and some were from kids Alexis’ age who were sending their allowances.

“It’s amazing, the support that’s been coming,” Jessica Shapiro said. 

Ian and Jennifer Shapiro have a sizable cheering section back home in Tuolumne County, where they met in the 1990s while working at Walmart.

Jennifer’s parents  — Dave and Debbie Dambacher — as well as her sister still live in town. Ian’s parents recently moved to Texas from the area. 

The Shapiros, both Sonora High graduates, and their three kids still visit Tuolumne County at least once a year, as Ian’s work took his family on the road.

The Shapiros’ support network extends beyond family. 

Also in their corner is Kathleen Dunagan, of Columbia, who, surprisingly, suffered from the same tumor and disorder as Alexis.

Dunagan, 43, moved to Tuolumne County five years ago and has struggled for decades with hypothalamic obesity.

Her story provides some insight into what Alexis is dealing with.

At 16, Dunagan felt “on top of the world” as lead cheerleader at Salinas High School. 

But that year, she was diagnosed with a tumor like Alexis’. 

She had a seizure and was in a coma for nearly a month after her surgery and was told she’d never walk again or graduate from high school.

She did both, pushing through rehabilitation after being confined to a wheelchair for a period. She later earned an associate’s degree in liberal studies. 

Dunagan has struggled with her health and weight throughout and, worse yet, loneliness. 

Even while traveling the world for a year singing and dancing with a youth performance program, “Up With People,” she felt ostracized. 

She felt shunned by other members of her dance troupe as she struggled with her weight and facial paralysis. 

“If I had one statement, it would be that ignorance is not bliss,” she said, adding that only out of ignorance do people judge her by her looks.

Dunagan said she’s happy to see the publicity about the disorder and donations to Alexis — whom she met in 2011 at a meeting for hypothalamic obesity sufferers in southern California. 

Other members of that small group have also been watching Alexis’ story with hope.

“We’re thrilled about this publicity. News of Alexis has gone literally around the world,” Dunagan’s mother, Charlene Deaver said. 

Dunagan said she will consider gastric bypass surgery herself. 

To donate to Alexis Shapiro, visit www.gofundme.com/3onp2g. Cards and letters can be sent to Alexis Shapiro at P.O. Box 147, Cibolo, TX 78108. 

To donate to the broad fight against craniopharyngioma, visit www.abta.org/ways-to-give/. 


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