It was just over three weeks ago when the news broke about the heart-wrenching death of Randy and Chelsea Rogers' newborn daughter, Rumer Rain.

Today Randy opened up about the happiness and love Rumer brought her parents, and the minuscule odds that combined to cut her life so short.

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.

"They started running test after test and nothing was wrong with her. It was a six-day process. It was heart-wrenching and grueling not knowing what was wrong. She was put on a feeding tube pretty early on because she couldn't eat or swallow, then she decided to stop breathing and we had to put her on a vent."

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. Turns out literally we are, genetically; we have the same exact recessed gene. The odds are astronomical."

But Randy and his wife do plan to have another child. And the horrific ordeal has had an unexpected altruistic affect on the Roger, especially so soon after such a tragedy.

Once you find out something is wrong with your baby, you're scared to death. You don't want to leave their side," says Rogers, who is looking to create more "home-like" hospital suites for families to live in while their babies are in the NICU.

"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."

To donate to NICU families in need at Seton Medical Center Austin, click here.

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