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Hemet Family Raises Awareness After Baby Is Diagnosed With Incurable Genetic Disease

LOMA LINDA (CBSLA.com) — An Inland Empire baby is suffering from a fatal disease that her parents say could've been kept from progressing had she been tested at birth.

Morgan Kelly says her first-born baby, Caoilainn, appeared to be healthy at birth hitting all her milestones until she was six months old.

It was then Kelly noticed that the baby had no interest in toys, had trouble nursing, and started crying uncontrollably.

"I was going in and out of the emergency room and in and out of doctor's offices and nobody listened to me," she told CBS2's Kristine Lazar. "I was telling them 'There's something wrong with my baby.' "

But it wasn't until after Caoilainn had lost two pounds in two weeks when she was admitted to Loma Linda University Children's Hospital.

After a series of tests, the family from Hemet was given a terrifying diagnosis: Caoilainn had Krabbe disease, a rare genetic disorder.

"The nervous system is a part of the body that's most affected in this disease and it has absolute control over breathing, influences circulation, growth and so eventually, all of the most important functions sustaining life will be interfered with," said David Michelson, a pediatric neurologist.

There is no cure for the disease, which is fatal, but if it is caught at birth through a newborn screening blood test, it is possible to keep it from progressing.

California does not test for Krabbe disease, but doctors at Loma Linda say doing so would cost only $1 per newborn. Two states test for the disease and four more soon will.

"I don't think I'll be able to rest until I know that it's been added on," Kelly said.

Caoilainn's parents hope to take her home from the hospital next week and have created a bucket list of things they want to do with her.

"I want to take her to the beach and I want to put her feet in the water and I want to build a sandcastle," Kelly said. "She doesn't deserve this. She deserves to live."

A GoFundMe site has been set up to help Caoilainn's family fulfill the list. Click here for more information

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