Pearl Joy Brown was born with a rare genetic disorder causing her brain’s development to stall in the first weeks of pregnancy, leaving her with a cleft upper lip, and a three per cent chance of survival.
A routine ultrasound four month into the pregnancy revealed that Ruth, 28, and Eric, 31, Brown's unborn daughter had alobar holoprosencephaly, and specialists said she would most likely not make it to term.
Faced with religious, medical and ethical decisions, the Nashville couple refused to terminate their pregnancy early. Now, despite the fact doctors have given Pearl a year to live, who will likely never walk, read or speak, her parents are fighting for her survival.
Because Pearl is not strong enough to nurse, she is fed through a nasal gastric tube. She has seizures daily and since her birth, she has returned to the hospital more than five times because of her weakened immune system.
'She’s fighting, and we’re fighting with her,' Mrs Brown said.
Thanks to a blog that a family friend of the Brown's started, which follows Pearl's journey, support for the three-month-old has poured in from around the world.
As well as the couple's support network through their church, which paid their bills when Mr Brown took several months leave to care for his wife and Pearl, donations of nearly $12,000 were also given to the family so they could buy a minivan.
One parent must always ride in the back with Pearl, and the couple's old car wasn't able accommodate the whole family.
Mr Brown said he is also grateful for Tennessee's TennCare program, which is covering the cost of Pearl’s $1million and growing medical care.
The couple admit that not many people understood their refusal to end the pregnancy early, despite Pearl's low chance of survival.
Kristina Guisler, a friend of Mrs Brown, said she wasn’t sure continuing with the pregnancy was the right decision.