You Can Support These Young Siblings Struck with the Rare LPIN1

Emma and Tripp Mattingly share the same infectious personalities of energy and happiness, but they also share the same rare genetic disease known as LPIN1, reports The Lebanon Enterprise.

Living with the disease has not been an easy journey for the Mattinglys as they are constantly fighting sickness and intense episodes that can be life-threatening. While life has become far from what this family has expected, they choose to keep their heads held high.

Emma was the first of the two born in 2013 and was birthed “perfect” as doctors would say. She was healthy as can be, but soon they would find out that their seemingly healthy child had something seriously wrong. Emma had a rhabdomyolysis episode, which destroys the muscles and can lead to serious complications or even death. She became clammy, lethargic and couldn’t even look her mother in the eye.

They rushed her to the emergency room, luckily just in time, because as soon as they arrived she stopped breathing and went into respiratory arrest. It was incredibly scary for the Mattinglys. Since LPIN1 is so rare and was only recently discovered in 2008, it took months before they came across the correct diagnosis to what onset the episode.

Tripp, their second child, was born in 2016 a few years after Emma. Because the chance of Tripp also having LPIN1 was relatively low and having Emma already diagnosed, these parents were confident that their second child would be disease-free. Surprisingly and unfortunately however, Tripp was also born with LPIN1. While it was a gut-wrenching reveal, these loving parents knew from experience how to handle it.

The Mattinglys do whatever it takes to keep their little ones healthy, even though being extremely aware and cautious can’t avoid occasional trips back to the hospital. They spent roughly 90 days there just in the last year.
Thankfully, they are receiving amazing support from their families and friends to help raise funds to support all their medical needs. It hasn’t been easy, but they surely know now that they appreciate life that much more. To learn more about how you can support this rare family, check out their event on March 3rd of this year.

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