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South Carolina mother competes in NYC Marathon in honor of daughter who died from rare muscle condition

Kinsley was born with Nemalin Myopathy that made it difficult for her to breathe and swallow on her own. She died before her 3rd birthday.

INDIAN LAND, S.C. — An Indian Land mother is racing for a mission in hopes of raising money to help further research in a rare muscle condition that cut her young daughter's life short.

Kinsley was born five weeks premature back in Aug. 2015 and from that moment her mother Erica Redinbo says life changed in the most unexpected way.

“From the minute she was born she was very special," said Redinbo. "She was born with a rare condition called Nemaline Myopathy which made it very hard for her to breathe on her own, swallow on her own. A lot of things that you would expect a newborn baby to be able to she wasn’t able to.”

Nemaline Myopathy is a rare muscle disorder where in some cases patients can have mild muscle fatigue and in other cases like Kinsley, the symptoms can be much more severe.

A Foundation Building Strengthen is partnering with 13 different research institutes in hopes of learning more about the condition.

“There is not a lot of people doing research on it," said Redinbo. "A Foundation Building Strength is the only sole provider in the USA currently looking for treatments and hopefully a cure one day."

As a charity partner, Redinbo competed in the NYC Marathon to help raise money and awareness. She adds it's also a chance to honor her daughter in an unforgettable way.

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“If running a marathon is something I can physically do it made me feel closer to my daughter knowing if her muscles worked the way they were supposed to when she was with us that being able to do this in her honor would be something that I cherished," said Redinbo.

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