That was the position Arthur and Brittney Price, of Beebe, found themselves in two years ago when their daughter Katilena was born legally blind with heart problems and without part of her brain. They knew she had a genetic disorder, but it took expensive genetic testing to reveal it was Mowat-Wilson syndrome, and the first case in the state of Arkansas.
"There was a time when autism and down syndrome were not known and people looked at them scared like they could catch whatever the person has," said Britney Price.
Katilena's condition is so rare there are less than 200 cases in the world. So few cases, so little information, the family faced many obstacles trying to get help. But at least now, two years and a dozen surgeries later, they know what's ailing her and say life is less about wading around in the unknown and accepting what they do know about their daughter's health.
Among the laundry list of conditions, another commonality among people with Mowat Wilson is a smiling face and happy demeanor.
"She is amazing, she has been through more than anyone I've seen in my life, it doesn't phase her, she is happy, she is cuddly. She likes to smile all the time," her mother added.
Katilena is developmentally delayed, but she is still developing.
"I've learned to appreciate the smaller things like new parents can't wait till their child rolls over or crawls or walk. The first time she looked me in the eyes was a huge thing, the first time she picked up a toy on her own," Britney added.
And together they celebrate small victories.
"She can stand up on her own for 20-30 seconds, she can do hi-fives," said Arthur Price.
And since they're not sure how long they'll have her, they cherish every moment.
"Bigger things don't matter. I don't care if she walks, it doesn't matter, just to be happy," Britney said, holding her daughter.
It's this lesson they hope others take away from their daughter's face, smiling through their struggles.
Since Katilena's diagnosis, the family says there have been two more in the state. The family believes there could be more people, but since Mowat-Wilson can appear similar to other genetic disorders, they may be under diagnosed.