Must Read: Strangers raise money to cover surgery for girl with rare disorder
CIBOLO, Texas (NBC) – A Texas girl is fighting for her life after a rare disorder has left her in a state of constant hunger, which led her to gain weight.
Now, she needs life-saving surgery but her father’s insurance will not pay for it.
Alexis Shapiro’s life changed forever two years ago.
Jenny Shapiro, Alexis’ mother, said, “I’ve been in contact with other craniophrangioma patients’ parents and they’ve lost their children to this exact thing. That scares me.”
Her family says 12-year-old Alexis had surgery to remove a brain tumor but the surgery actually crushed her hypothalamus.
Shapiro said, “It leads to your body believing that you’re starving, no matter if you’re eating at the time, if you’ve already eaten and if you don’t get food, you’re going to die.”
Though the family has tried everything to manage Alexis’ weight, nothing has worked.
Ian Shapiro, Alexis’ father, said, “You run out of options.”
Jenny Shapiro said, “Each month it gets harder. You have to buy bigger clothes.”
The condition caused Alexis to go up a dress size every month and jump from 50 pounds to more than 200 pounds.
She is now suffering from Type 2 diabetes.
Ian Shapiro said, “It’s hard to adjust to and to figure out. Hard to wrap your mind around.”
The emotional scars are even larger.
He said, “It was just a different kid from three to four weeks previous when she would play and run and dance.”
Doctors are recommending gastric bypass surgery.
Alexis’ healthcare is covered under her father’s plan but the former Air Force veteran’s provider, Tricare, is denying the procedure.
Jenny Shapiro, said, “We were upset obviously. We hoped that they would make an exception.”
According to company policy, only patients 18 or older, or those with full bone growth, can have the surgery.
She said, “I know what’s going to happen. I know that she’s not going to live a long life if we don’t do something about it.”
A fund that was set up to help pay for the surgery has raised over $70,000.
Officials say that is enough for the operation but the family may need to pay for the aftermath and any complications.