OLATHE, Kan. Five months ago, Christina and Adam Hannan were celebrating the arrival of their sixth child, a beautiful baby girl named Annalise.

But the joy of her birth quickly turned to heartbreak. Annalise wasn’t crying. She wasn’t moving. Something was wrong.

Doctors diagnosed her with congenital hypomyelinating neuropathy, a condition so rare that fewer than 50 cases have ever been recorded worldwide, and only seven people are known to be living with it today.

It affects the development of nerves, leaving babies with very low muscle tone. They can’t swallow, cry, or even cough. Most don’t live past the age of three.

“This is Annalise,” her father Adam says. “Annalise was born with a super rare genetic disorder.”

What makes Annalise’s story even more unbelievable—the Hannans have lived this nightmare before.

Fourteen years ago, their son Myles was born with the same rare disorder.

“We know one of the 50 because he was our son,” Adam said. “We had a son with this same condition” Adam continued on to say.

Myles lived for just 20 months.

So, this time around, every moment with Annalise matters even more.

Annalise doesn’t cry. She breathes through a trach. She eats through a feeding tube. And each night, she sleeps connected to a ventilator.

Yet to her parents, she is not defined by tubes or machines. She’s defined by joy.

“It’s horrible, but every day is a gift. So you wake up, and it’s like—we have today” Christina Hannan, Annalise’s mother said.

“It’s both hard and good at the same time, our mission is to let her know that she is loved—as much and as often as we can,” Adam said.

That mission is shared with Annalise’s four siblings, who help care for their baby sister with quiet strength and compassion.

The Hannans are not sugarcoating the pain. They live in the tension of knowing their daughter could pass away at any moment. But they refuse to live in fear.

“We have to – that the thing you have to put one foot in front of the other you just have to there’s no choice so we proceed with joy,” Adam said.

Annalise may never walk or speak. But she feels love, she shows joy and she matters.
For the Hannans, that’s everything.