Randy Rogers and his wife, Chelsea, welcomed their baby girl into the world on June 3.
Just one week later, Rumer Rain was put to rest.
“The moment was just full of joy. We thought we had a healthy baby. We shared the news with friends and even posted a picture on social media,” Randy said.
But things took a terrible turn.
Rumer wouldn’t eat, and she wouldn’t open her eyes.
Nurses said it was normal for babies to think they’re still in their mother’s womb, and that it might take a day or so for Rumer to wake up and eat.
But then she stopped breathing.
“They started running test after test and nothing was wrong with her,” Randy said. “It was a six-day process. It was heart-wrenching and grueling not knowing what was wrong.”
She suffered from a rare disease called nonketotic hyperglycinemia (NKH). It is a genetic disorder that affects 1 out of every 66,000 newborns in the U.S. each year and has no cure.
“Chelsea and I always thought that we were two peas in a pod,” said Rogers. “Turns out literally we are, genetically; we have the same exact recessed gene. The odds are astronomical.”
Thankfully, the gene will not prevent Randy and Chelsea from having another baby.
“We’ll just have to do in vitro fertilization,” said Rogers. “There will need to be genetic screening and genetic testing done before the implantation of 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.”
Randy Rogers teamed up with Seton Medical Center Austin to create a fund to provide nesting suites for families of babies being cared for in neonatal intensive care units (NICU), according to People.
“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.”
— People (@people) June 25, 2015