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| The Hurst Family YOUNG LAYNA HAS RARE DISEASAE |
SATURDAY AT
FAIRGROUNDS
FROM THE CRITTENDEN PRESS
For Crystal and Dustin Hurst, there are many reasons to avoid looking back.
For starters, it’s too scary to think of what could have happened.
It’s just easier to count their blessings and face tomorrow with greater hope that their youngest child, soon-to-be-2-year-old Layna, will continue to improve.
Their daughter was born with vein of Galen malformation and was diagnosed within a few days of her arrival. The family spent the next week at Kosair’s Children’s Hospital in Louisville and so far, young Layna has undergone two surgeries. She will possibly require two more.
During their early struggles – when they were just learning the details of their daughter's disease – Kosairs and the Ronald McDonald House were among their greatest supporters.
Now, they want to pay that kindness forward.
On Saturday, Oct. 29, the Hursts are hosting a benefit tractor and truck pull with all the proceeds to benefit the Ronald McDonald House Charities of Kentuckiana and Kosairs Children's Hospital Charities. With the help of Crittenden County Lions Club, the event will be held at the fairgrounds beginning at 5 p.m.
“This is something that has been put on our hearts to do. God has blessed our family so much that we wanted to be able to pay it forward,” said Crystal Hurst, a U.S. Mail carrier on Rural Route 1.
She and her husband both grew up in Crittenden unty and they have a huge support network here with lots of friends being pulling enthusiasts.
"It's literally a seed that has been planted by God for us to be doing this and when you have God leading the way, nothing is impossible, " said Dustin Hurst, a heavy equipment mechanic and owner of Hurst Diesel.
“We really wanted to be able to do this so maybe it will help another family like it did us. When you are faced with a situation like we were, Ronald McDonald House is such blessing. It’s like home. And the people at Kosairs were wonderful,” Crystal said.
The disease that has made Layna’s life a bit complicated so far is very rare. Outside of a handful specialists, few doctors or nurses understand it or know what it is, said Crystal.
Layna sees Dr. Shervin Dashti a neurosurgeon at Norton Healthcare along with cardiologist Dr. Brian Holland of the University of Louisville Pediatric Cardiology and Dr. William Bruce, her pediatrician.
To simplify her daughter’s condition, Crystal says Layna was born with hundreds of extra blood vessels. The veins and arteries are pushing too much blood through the girl’s heart, creating congestive heart failure issues.
“Only one in three million children are born with this,” her mom said.
Surgery is required to close off the extra vessels.
“The procedure they do is to take a catheter and go into the main artery in her leg then snake the catheter into up through her heart and on up into center of her brain. Then they glue off unneeded veins and arteries,” Crystal explained.
The risks are high for stroke and other complications. Layna had her first procedure at 15 months then another not long ago.
“Had this happened to me 36 years ago, I probably would not be here,” said Crystal, pointing out that research over the last couple of decades have helped doctors save lives of infants who come into this world with such condition.
“Layna will probably have to have two more operations,” her mom continued. “But some children end up having 10 or more.”
Layna is a bit small for her age. She weighs 20 pounds. Otherwise, she’s as normal as anyone else and you wouldn’t even recognize her situation by looking at her. Her heart works so hard that she can’t eat enough calories to keep up.
“We’re trying to fatten her up a little,” Crystal said with a chuckle.
The bigger her daughter gets, the easier surgery is on her body. With the support of her older brother, three-year-old Luke, Layna has learned to be strong, independent and ready to tackle anything that is thrown her way.
"It makes us proud to see how protective Luke is with her,” Crystal said.
For now, looking back at how far they’ve come, the family is ready to pay forward whatever it takes to help make similar journeys for others a wee bit more comfortable.
