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Tell Me Something Good: Rachel's Story

Rachel Daniels holds her daughter, Alani.

"In her case, the pancreatitis will kill her because her body isn't strong enough to fight it."

Rachel Daniels is talking about her two year old daughter Alani. One of her five children and one in 10,000,000 born with a very rare disease.

"I was worried immediately when I saw her," said Daniels. "I knew that it was really unusual for a child to be born and be all muscle."

Daniels says Alani didn't have any fat on her body and she told the doctors that something was wrong.

"They told me that it was all just part of the birthing process and to just wait," she said.

So she did wait for three long months with a baby that was always hungry.

"I had alternated the bottle, and even when bottle feeding she would just cry and cry and cry for more," Daniels said. "She was never full."

Daniels says every appointment was the same. Doctors would say her daughter was normal.

"Little girls run small (they would say) so that was basically to explain why she had no fat on her."

Daniels refused Alani's first shots and continued to plead with doctors. She finally convinced them to admit her to a hospital because of a bad cold. But the new doctor wasn't any different. She says he took one look, said he'd be back, and walked away.

"Well he never came back."

The next morning, a team of doctors arrived and asked what she thought was wrong with Alani. Rachel had been Googling muscular babies and one word kept reappearing.

"The word was lipodystrophy," Daniels said. "I said I know what she has right here. I've seen the pictures. (The doctor) looked at me and said I think you're right, and in his hand was a napkin where he had written lipodystrophy."

It's an uncontrolled loss of fat tissue that causes a drop in an important hormone called Leptin. Without this, the body's system for regulating energy falls out of balance. There is no cure.

And every single moment of every single day, I live this disease," Daniels cried.

It's moments like this that have pushed Daniels to become an advocate for mothers everywhere. She hopes telling the story of her daughter's misdiagnosis will help them to stand up to doctors who are too quick to dismiss rare diseases.

"That's what's important," she said. "Being the voice, bringing the awareness out there, making your stance and being heard."

"I didn't choose rare... rare chose me."

Note: Rachel shared a special video with more information on rare diseases and how few have a treatment. You can watch it here.


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