Randy Rogers and his wife Chelsea were thrilled when they welcomed their third daughter, Rumer Rain, on June 3 — especially because she had dark hair.
"My other two babies [daughters Isabel, 5, and River, 21 months] have my light hair. Chelsea really wanted a baby with dark hair like her. The minute Rumer was born I was like, 'Hell, yes!'" the Randy Rogers Band frontman tells People magazine. But things quickly turned from joyful to mournful.
Was a great day, friends. Welcome Rumer Rain. A photo posted by Randy Rogers Band (@randyrogersband) on Jun 3, 2015 at 6:33pm PDT
Was a great day, friends. Welcome Rumer Rain.
A photo posted by Randy Rogers Band (@randyrogersband) on Jun 3, 2015 at 6:33pm PDT
"[Rumer] wouldn't eat and she wouldn't wake up," the 33-year-old continues of his daughter, who passed away at just six-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."
About eight hours after her birth, Rumer was moved into the NICU. "It was heart-wrenching and grueling not knowing what was wrong," he remembers. "She was put on a feeding tube pretty early on because she couldn't eat or swallow, then she decided to stop breathing."
We are sad to say that Rumer Rain Rogers passed away last night. She was well loved, well cared for and in her parents loving arms.— Randy Rogers Band (@rrbchoir) June 10, 2015
We are sad to say that Rumer Rain Rogers passed away last night. She was well loved, well cared for and in her parents loving arms.
The concerned parents finally received a diagnosis: nonketotic hyperglycinemia (NKH), an incurable and rare genetic disorder. The condition impairs the brain and leads to seizures, difficulty breathing, muscle limpness and lethargy.
Despite his tremendous loss, Randy is trying to stay positive. "I'm just so happy that there are men and women so smart and passionate to be able to identify these things," he tells People.
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