Just weeks after enduring one of the worst tragedies imaginable, Randy Rogers is opening up about the death of his newborn daughter.

The Randy Rogers Band singer and his wife, Chelsea, welcomed their third daughter, Rumer Rain, on June 3, and they rejoiced over the fact that unlike their other two daughters she had dark hair like her mother. The ecstatic couple posted a photo to social media, but they were soon concerned for their newborn.

Was a great day, friends. Welcome Rumer Rain.

A photo posted by Randy Rogers Band (@randyrogersband) on

“She wouldn’t eat and she wouldn’t wake up,” Rogers tells People. “She was very lethargic, she never opened her eyes. We kept getting assurances from the doctors and nurses a lot of babies think they’re still in mommy’s belly and they don’t want to wake up for a day or eat but then Rumer went to the NICU about eight hours after her birth.”

Doctor ran multiple tests, but were unable to identify that anything was wrong with the baby. Tests went on for six days, and in the meantime, Rumer Rain had to be put on a feeding tube, then a ventilator after she first couldn’t eat or swallow, then stopped breathing on her own. On the sixth day, the couple received a devastating diagnosis: nonketotic hyperglycinemia (NKH), a rare genetic disorder that affects approximately one out of 66,000 newborns in the U.S. each year. The disorder impairs the brain, leading to seizures, breathing and feeding difficulties, muscle limpness and lethargy. There is no cure.

“Chelsea and I always thought that we were two peas in a pod,” Rogers reflects. “Turns out literally we are genetically, we have the same exact recessed gene. The odds are astronomical.”

Rumer Rain passed away six days after she was born, and though the couple remain heartbroken, Rogers says he’s grateful to the medical team who made her diagnosis. “I’m just so happy that there are men and women so smart and passionate to be able to identify these things,” he says. “Now because my daughter died and we now know we carry this gene, no one else in our family will have to have that happen to them and science is to thank for that.”

There’s actually some small good news for the couple; despite their shared recessive gene, they can try to have another child through in-vitro fertilization, which will allow for genetic screening and testing before implanting the fertilized egg. “It’s given us a lot of joy and hope knowing that it is possible for us to do this, it’s just going to have to be a different route than the traditional one,” Rogers admits.

In the meantime, they are trying to help other families who are going through a terrible situation like the one they’ve survived. Rogers has teamed with Seton Medical Center Austin to create a fund to help provide nesting suites for families of infants who are receiving care in neonatal intensive care units or NICU.

“Once you find out something is wrong with your baby, you’re scared to death. You don’t want to leave their side,” the singer says. “Chelsea was discharged from the hospital after just two days, but our nesting room enabled us to still be there for Rumer and hold her around the clock. You want to be there all the time, you want to know who is taking care of your kid, you want to speak to the doctors and nurses … This is something every hospital in the country should have, an amazing system of support set up for parents caring for a sick child, and it’s something Chelsea and I have become very passionate about.”

Click here for more information, or to donate to help families whose children are in NICU.

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