Earlier this month, the absolutely heartbreaking news came out that Randy Rogers and his wife had lost their week-old daughter, Rumer Rain, to a “very rare condition.” Now the singer has opened up to People magazine about how his life went from the joys of meeting his beautiful daughter for the first time to the devastation of having to say good-bye.
Rogers tells People that when his daughter was born on June 3, he and his wife were beyond happy, as most parents are, but that their happiness soon turned to worry when their new daughter didn’t act quite right.
“She wouldn’t eat and she wouldn’t wake up,” says Rogers of his baby girl who passed away at just 6 days old. “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.”
Despite six days of testing, doctors couldn’t figure out what was wrong. Then they finally got the diagnosis.
Then came the diagnosis: nonketotic hyperglycinemia (NKH), a rare genetic disorder that affects about 1 in 66,000 newborns in the U.S. each year and has no cure. It impairs the brain and leads to seizures, breathing and feeding difficulties, muscle limpness and lethargy.
“Chelsea and I always thought that we were two peas in a pod,” says Rogers. “Turns out literally we are genetically, we have the same exact recessed gene. The odds are astronomical.”
As amazing as it sounds, Randy and his wife haven’t given up on having another baby. They just say they will use genetic testing and in vitro fertilization to ensure history doesn’t repeat itself. He also says that he’s now teamed up with Seton Medical Center Austin to create a fund which will provide families with “nesting suites” where they can stay while their babies are being cared for in the neonatal intensive care units or NICU.
“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.”
Such an inspiration. You can find out more about the nesting suites and how to donate here. You can also read the rest of Randy’s interview with People here.
