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Mother of daughter with rare genetic condition gifted 6 months of housing payments

Shannon Sample is a single mother raising three daughters, one requiring 24-hour care. Now, a West Michigan based financial group is covering her housing payments.

HOLLAND, Mich. — Shannon Sample is a single mother raising three daughters. Her middle daughter Emersyn, has a rare genetic condition called Nicolaides-Baraister Syndrome that has fewer than 200 cases in the world. Now, Legacy Financial Network in Holland will be providing her family with six-months of housing payments.

"I can breathe. I mean, I've been at my house for 18 years. I've never been in a situation like this, like times are tough," said Shannon Sample as she was still in shock after being told that her family was selected for financial assistance.

It was a total surprise. Sample arrived at Legacy Financial with her three daughters and her father, expecting another interview regarding their application, only to be told that they have already been selected.

'We want to help families, as we say a lot, give them a hand up," said co-founder Mike Markey, as the group seeks to regularly support families who find themselves in difficult circumstances, saying Sample's family is deserving as they navigate a situation they never expected to be in.

"She talked. I have videos of her talking. She was potty trained. She ate normal," said Sample as she described her daughter Emersyn before the various diagnoses began. 

"At 16 months, she had her first seizure. So we thought it was just a one time deal....then 24 hours to the time, the next morning, she seized again. So then we got admitted in, that's when they diagnosed her with epilepsy," said Sample.

Doctors also discovering that her daughter has a Chiari malformation, where her brain is too large for her skull. After rounds of surgeries, they woke to a new reality on Christmas of 2018.

"She woke up and she was like, a whole different kid. She couldn't stand up...and then she stopped eating, she would not go to the bathroom."

After another brain surgery and testing at the University of Michigan, they waited 18 more weeks to find out she has Nicolaides-Baraitser syndrome, a rare genetic condition that affects various body systems, as Sample described some of the various regiments she keeps up with to care for her daughter, while working from home and raising Emersyn's two siblings.

"She has pancreatic insufficiencies. So now every time I feed her, I have to feed her three to four times a day."

While receiving support from her parents, the level of care still is taking its toll physically, financially, and mentally.

"My wife finally sat down, talking to her, told her, you know, you're going to get burnout real, real bad. We need help," said Sample's father Gary Conrad.

After applying for assistance, Legacy Financial Network was moved by her story, and knew that they needed to help.

"Every single one of us, it doesn't matter where you're at in life, you had that moment in your life where if somebody didn't step in and help, you would have gone down a different path, and we're just trying to be that beacon for people," said Markey.

Now her family will not need to worry about housing payments for six-months.

"I was worried what I was gonna do for Christmas, you know, and [my kids] deserve the world, and that, you know, that's a relief," said Sample on how helpful the money will be, especially as they look to take care of various repairs in the home.

Sample's message for other parents why may be struggling: "It's okay to not to be okay. And it's okay to ask for help. Because there's help out there. There's people that are willing to help you."

Families interested in applying for assistance can contact Legacy Financial Network online


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