SO THE CITY AND COUNTY MADE THE INVESTMENT. A SELLERSBURG COUPLE IS RAISING AWARENESS AFTER THEIR NEWBORN DAUGHTER WAS DIAGNOSED WITH A RARE GENETIC DISEASE. WLKY’S MEGAN MATTHEWS SAT DOWN WITH THE FAMILY AND HAS MORE ON HOW KNOWING SIGNS SAVED THEIR DAUGHTER’S LIFE. SHE WAS SEIZING, SHE WAS INTUBATED. THEY BASICALLY PUT HER IN AN INDUCED COMA AT JUST TWO DAYS OLD. JENA AND JARRETT YOUNG’S DAUGHTER, WILLOW STOPPED EATING, BECOMING LETHARGIC, AND EVENTUALLY NONRESPONSIVE. AT ONE POINT, WE WERE RUSHED OUT OF THERE BECAUSE HER HEART RATE DROPPED INTO THE 30S AND HER O2 DROPPED INTO LIKE, THE 70S. DOCTORS AT NORTON CHILDREN’S HOSPITAL IMMEDIATELY BEGAN RUNNING TESTS ON WILLOW AND DISCOVERED SHE HAD CITRULLINEMIA. IT’S A RARE DISEASE THAT DOESN’T ALLOW THE BODY TO PROPERLY REMOVE AMMONIA, A TOXIC PRODUCT OF PROTEIN BREAKDOWN, AND IF LEFT UNTREATED, CAN BE LIFE THREATENING. JARRETT AND I, UNBEKNOWNST TO US, WERE BOTH CARRIERS OF. WE HAD A WE HAVE A SUPER HEALTHY TWO AND A HALF YEAR OLD WHO’S NEVER HAD SO MUCH OF BASICALLY A FEVER IN HIS WHOLE LIFE TO THIS, AND FINDING THIS WAS SUCH A BLOW BECAUSE WE HAD NO IDEA THE HIGH AMMONIA LEVELS CAUSED SEIZURES, LEAVING WILLOW FIGHTING FOR HER LIFE IN THE NICU FOR 40 DAYS. SHE SHOULDN’T HAVE TO BE STRONG, BUT JUST HER STRENGTH AND AND THE ABILITY TO WALK THROUGH THAT OR, YOU KNOW, JUST BE A BABY THROUGH THAT. AND THE RESILIENCE SHE SHOWED HAS REALLY TOUCHED A LOT OF PEOPLE. HER PARENTS NOW URGING OTHERS TO KNOW THE SIGNS AND ASK MORE QUESTIONS IF SOMETHING FEELS OFF, IT’S PROBABLY OFF. AND EVEN IF IT’S A IF IT’S A SITUATION LIKE THIS OR WHATEVER THE CASE MAY BE, JUST TRUST YOUR GUT. WE’RE GIVEN THAT AS PARENTS, NOT ONLY SAVING HER LIFE, BUT GIVING HER A CHANCE TO LIVE IT. MEGAN MATTHEWS WLKY NEWS. AND THE DISEASE ALSO CAUSED WILLOW TO HAVE KIDNEY FAILURE. SHE QUALIFIED FOR A KIDNEY TRANSPLANT. HER DAD, JARRETT, FOU
Parents share daughter’s battle with rare genetic disorder to raise awareness
The parents learned their baby had Citrullinemia, a rare genetic condition that prevents the body from properly removing ammonia, a toxic byproduct of protein breakdown.
Gina and Jarret Young, who live in Southern Indiana, never imagined there would be complications with their newborn daughter’s health. At just two days old, Willow stopped eating, became lethargic, and eventually unresponsive. “She was seizing, she was intubated. They basically put her in an induced coma,” said Jarret.Doctors at Norton Children’s Hospital in Louisville, Kentucky, which is around 11 miles from their hometown of Sellersburg, Indiana, quickly conducted tests. They discovered that Willow had Citrullinemia, a rare genetic condition that prevents the body from properly removing ammonia, a toxic byproduct of protein breakdown. If left untreated, the condition can be life-threatening.“Jared and I, unbeknownst to us, were both carriers of ,” Gina said. “We have a super healthy two-and-a-half-year-old who’s never had so much as basically a fever in his whole life. Finding this was such a blow because we had no idea.”Willow’s high ammonia levels caused seizures and left her fighting for life in the NICU for 40 days. Her parents are touched by their daughter’s resilience.“She shouldn’t have to be strong, but just her strength and the ability to walk through that—or, you know, just be a baby through that — and the resilience she showed has really touched a lot of people,” Gina said. The Youngs hope that by sharing their story, it can help another family going through something similar.“If something feels off, it’s probably off. Even if it’s a situation like this or whatever the case may be, just trust your gut. We’re given that as parents,” Gina said. Willow qualified for a kidney transplant. Her dad, Jarret, found out he was a match and is her living donor.
Gina and Jarret Young, who live in Southern Indiana, never imagined there would be complications with their newborn daughter’s health.
At just two days old, Willow stopped eating, became lethargic, and eventually unresponsive.
“She was seizing, she was intubated. They basically put her in an induced coma,” said Jarret.
Doctors at Norton Children’s Hospital in Louisville, Kentucky, which is around 11 miles from their hometown of Sellersburg, Indiana, quickly conducted tests. They discovered that Willow had Citrullinemia, a rare genetic condition that prevents the body from properly removing ammonia, a toxic byproduct of protein breakdown. If left untreated, the condition can be life-threatening.
“Jared and I, unbeknownst to us, were both carriers of [Citrullinemia],” Gina said. “We have a super healthy two-and-a-half-year-old who’s never had so much as basically a fever in his whole life. Finding this was such a blow because we had no idea.”
Willow’s high ammonia levels caused seizures and left her fighting for life in the NICU for 40 days. Her parents are touched by their daughter’s resilience.
“She shouldn’t have to be strong, but just her strength and the ability to walk through that—or, you know, just be a baby through that — and the resilience she showed has really touched a lot of people,” Gina said.
The Youngs hope that by sharing their story, it can help another family going through something similar.
“If something feels off, it’s probably off. Even if it’s a situation like this or whatever the case may be, just trust your gut. We’re given that as parents,” Gina said.
Willow qualified for a kidney transplant. Her dad, Jarret, found out he was a match and is her living donor.
