Parents' Heartbreaking Journey: Loss of Son Fuels Determination After Rare Disorder Diagnosis for New Baby Girl

• EXPLORE FURTHER: Our child's frightening ailment is so uncommon that only 28 other kids worldwide suffer from it.

A Kansas The family's hope for recovery was crushed mere moments after they welcomed their newborn daughter.

Fourteen years back, Christina and Adam Hannan experienced what no parent should have to go through: the death of their child, Myles.

His departure created an emptiness in their hearts, which they had hoped would start to heal around five months prior when their daughter Annalise was born.

Yet from the instant she came into the world, their universe started crumbling once more.

Annalise was not shedding tears. She remained still. The doctors hurried over—soon after, the Hannan family received another devastating shock.

Their new arrival was found to have congenital hypomyelinating neuropathy, an uncommon nerve condition so rare that only under 50 instances have been documented worldwide.

As of today, just seven individuals worldwide are recognized as living with this extremely 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," said her dad, Adam. Fox4 'Annalise came into this world with an extremely uncommon genetic condition.'

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.

'One of those 50 is known to us,' Adam stated. 'Since he was our child. We have a son who has the same condition.'

Their child Myles only lived for 20 months.

Currently, the Hannans are preparing for an equally unimaginable trip, accompanied by the same unforgiving illness. Despite the sorrow, they've decided to treasure each beat of their hearts and every instant.

It's terrible, but each day is a blessing," Christina stated. "So when you awaken, it's like... we've been granted this day.

It’s simultaneously challenging and rewarding," Adam said. "Our objective is to make her understand that she is cherished—whenever possible and with all our hearts.

Somehow, amidst such great sadness, they press onward.

We must do this – that’s the deal," Adam stated. "You simply need to move one foot after another. It’s obligatory. Hence, we continue with happiness.

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