20-05-2025
Parents hoped baby girl would help them get over loss of their son... until they got heartbreaking news
A Kansas family's dream of healing was shattered just moments after welcoming their baby girl into the world.
Fourteen years ago, Christina and Adam Hannan faced every parent's worst nightmare, the loss of their son, Myles.
His passing left a hole in their hearts, one they hoped might finally begin to mend five months ago with the birth of their daughter, Annalise.
But the moment she was born, their world began to collapse all over again.
Annalise wasn't crying. She wasn't moving. Doctors rushed in - and within hours, the Hannans were dealt a second, unimaginable blow.
Their newborn was diagnosed with congenital hypomyelinating neuropathy, a nerve disorder so rare that fewer than 50 cases have ever been recorded across the globe.
Today, only seven people are known to be living with the 'super rare' condition.
The condition, which begins at birth, prevents the body from producing enough myelin - the vital protective sheath that coats nerves. Without it, nerve signals can't travel effectively, resulting in severe muscle weakness and neurological failure.
Most babies with the disorder don't live beyond their early years, according to the National Library of Medicine.
'This is Annalise,' her father Adam told Fox4. 'Annalise was born with a super rare genetic disorder.'
She doesn't cry. She breathes through a tracheostomy. She feeds through a tube. And every night, she sleeps connected to a ventilator - each day a fragile victory against the odds.
But what makes Annalise's diagnosis even more devastating is that her parents have been here before.
'We know one of the 50,' Adam said. 'Because he was our son. We had a son with this same condition.'
Their son Myles lived just 20 months.
Now, the Hannans are bracing for the same unthinkable journey, with the same merciless disease. And yet, amid the heartbreak, they have chosen to cherish every heartbeat, every moment.
'It's both hard and good at the same time,' Adam Hannan (pictured with baby Annalise) said, 'our mission is to let her know that she is loved - as much and as often as we can'
'It's horrible, but every day is a gift,' Christina said. 'So you wake up, and it's have today.'
'It's both hard and good at the same time,' Adam added. 'Our mission is to let her know that she is loved - as much and as often as we can.'
And somehow, in the face of so much sorrow, they continue on.
'We have to - that's the thing,' Adam said. 'You have to put one foot in front of the other. You just have to. There's no choice. So we proceed with joy.'
