Baby Born With Rare Genetic Disorder, Requires Constant Watching

ORANGE PARK, FL -- Baby Cassidy was born in June, a child her parents wanted so very much. They suffered through one miscarriage and were relieved during the next pregnancy that tests showed everything was okay.

But when Cassidy was born, the emergencies began.

Cassidy has a rare genetic disorder called Congenital Central Hypoventilation Syndrome or CCHS. Cassidy's mom says only about 200 people in the U.S. have CCHS.

Cassidy's brain, her mom explains, doesn't tell her to keep breathing when she's asleep or upset.

She has a vent and a trach to keep her alive. But if she starts to cry and doesn't calm down within about 60 seconds, she can turn blue and die, according to her mom.

The frightening aspect is, because of the breathing equipment, Cassidy cannot make a sound.

She can't warn anyone she's about to get really upset.

So mom must stare at her face, watching for the slightest sign of trouble. Marne, Cassidy's mom, knows how to react. She starts to blow on her baby to force a breath.

Most times it works.

But when it doesn't she has to rush into emergency procedures. And that can happen 2-3 times a day.

Marne has a nurse helping her now, but that funding runs out in a few weeks.

Click on the video to go inside this family's home in Orange Park to get a better understanding.

Cassidy's dad is an electrician and can't afford to be sleepy on the job because he works way up high off the ground, Marne explains. So mom has stopped her career and sits day and night staring at her precious little girl.

How does she go the bathroom? "I don't," Marne says, unless she can flag down a neighbor she spots outside the window.

Cassidy's parents need a hero, a very specific hero.

They need a pediatric nurse who is trained or can be trained to help Cassidy with her vent and emergency procedures. They are hoping someone will just donate some time to be with them.

They also are asking for an expert to help them navigate the financial aid system. Marne says Medicaid has turned them down, but she believes there must be a way to get help for Cassidy.

There is hope for Cassidy. Marne says at about age 4 she can have a device surgically implanted to help her breath.

But right now, if you can be a hero to this family, go to firstcoastnews.com and click on BE A HERO.

Please remember good wishes are wonderful, but this family needs a hero with expertise.

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