Prayers needed for Georgia baby with rare form of dwarfism

ATLANTA - A Douglasville family is hoping to soon bring their baby girl home from the hospital, where she's been since the day she was born six months ago. 

Paisley Courson has never been outside the walls of Children's Healthcare of Atlanta. That's because she has a rare and lethal form of dwarfism called Thanatophoric dysplasia. The skeletal disorder is characterized by a disproportionately small ribcage, short limbs, and folds of extra skin on the arms as well as legs.

According to the National Library of Medicine, the term "thanatophoric" is Greek for "death baring" and the condition occurs in 1 in 20,000 to 50,000 newborns. 

Melissa Courson, Paisley's mom, was told when she was 20 weeks pregnant that her baby wouldn't make it through birth; however, her daughter had other plans. 

Paisley arrived six weeks early on August 28 and weighed 5 lbs. 2 oz. 

"Paisley has continued to fight and beat all outcomes in such a short time-span," Courson said on Facebook.

In October, she had tracheotomy surgery to continue her oxygen through a trach in her neck.

She also had cranial decompression surgery where surgeons drilled away some of the bone around her spine and skull to relieve the pressure, allowing for blood flow. The other goal of the surgery was to help her growing process and to help her breathe better on her own. 

"Individuals with this condition have difficulty breathing on their own and require respiratory support such as high flow oxygen through a cannula or ventilator support via tracheostomy." 

Paisley recently transitioned to the Technology-Dependent ICU (TICU) at CHOA, which her mother said is one step closer to bringing her little girl home. 

"She has been on the home ventilator for a while," her mom said. "Our goal is for her not to get sick anymore so we can get her home." 

Courson said her daughter will only grow to be about 2.5-feet-tall. 

"This condition is so unknown to doctors and the world," Courson told FOX 5's Katie Burk. "We rely on the help of other families to get us through some of this and we rely on God for our strength." 

"Hospital life is hard on our little family as we travel back and forth every day to the hospital and we also have other kids," Courson said. "Balancing home life and hospital life is hard." 

Courson said through it all, her daughter endures hospital life with a huge smile. 

"She is one tough cookie and has endured more than I can imagine," Courson said. "She gives me hope in life and makes my day so much better." 

A GoFundMe account has been set up to help the Courson family with medical expenses. If you would like to donate, click here.

To keep up with Paisley's journey, you can follow "Prayers for Paisley" on Instagram or on Facebook.