News 4 Investigates: Girl overcomes life threatening disease and - KMOV.com

News 4 Investigates: Girl overcomes life threatening disease and thrives

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(KMOV.com) - Maybe you've only heard of it from Hollywood: the Bubble Boy disease.

In the 70's John Travolta starred in a movie about the condition, playing a young man without a functioning immune system who had to live in a plastic bubble-protected from the rest of the world.

But the disease is very real and even now continues to claim the lives of countless infants and children.

Even a common cold can be deadly if the disease is left untreated. Though many other states require early screenings, Missouri does not.

“My gut told me there was something seriously wrong with Demi. I knew it,” said Pattie King, mother.

Though it's been 15 years, King recalls the day she rushed 3-month-old Demi to the emergency room.

“They said you need to call whatever religion you are, call a priest and get her last rights tonight and I lost it,” said King.

The diagnosis was a mystery for almost a month. Finally, doctors told her it was a disease called Severe Combined Immunodeficiency-or SCID.

The treatment is intense and at that time, not always successful.

Her mother chose a new treatment, giving the tiny infant chemotherapy and a stem-cell transplant from donated cord blood. At every step, doctors prepared King for the worst.

“I just kept looking at them and saying, no, no she will not die,” King said.

Some of the hardest days were captured in photos and shows Demi’s big brown eyes finding the camera, carrying on.

News 4 first met Demi many years ago, with camera allowed exclusive access, back when an ominous sign posted on the front of her hospital room door warned that no visitors were allowed inside.

“Bubble boy just sounds weird to me, because I'm not a boy, so bubble girl just fits me better,” said Demi.

Now 15-years-old, Demi's been officially declared cured.

Demi's still posing for the camera and says she is a self-declared Selfie Queen. But that's not her only crown.

“My dream goal is to be Miss America one day, but I also want to be an actor,” said Demi.

Neither Demi’s size nor her diabetes, both side effects from SCID, hold her back.

Free from any restriction, a typical teenager far away from her bubble and yet still aware of what could have been.

“I love to live life because I don't know if I am going to get it tomorrow,” said Demi.

“All you can do is just pray and believe in miracles and I have the proof that miracles exist,” said King. 

Her mom wants other parents to know just how important it is to get newborns screened as early as possible. Survival rate starts to drop after an infant is 3-months-old.

Currently, doctors say, Missouri does not have funding for mandatory screenings. But talk to your pediatrician because life-saving tests are available.

Copyright 2016 KMOV (Meredith Corporation). All rights reserved.

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