When news broke that musician Randy Rogers' wife, Chelsea, gave birth to the couple's third child, fans and followers of the artist rejoiced and even extended their greetings via social media. Days following the glorious celebration, however, things turned dark for the family as the death of their new baby girl, named Rumer Rain Rogers, made headlines.
Was a great day, friends. Welcome Rumer Rain.
A photo posted by Randy Rogers Band (@randyrogersband) on Jun 3, 2015 at 6:33pm PDT
"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," Rogers shares, breaking his silence since the death of his 6-day-old daughter was reported. Their joy quickly turned to sadness though, as Rumer eventually showed alarming signs that prompted panic to her two parents.
Rogers recalls, "She wouldn't eat and she wouldn't wake up." The musician goes on to describe his deceased daughter as "very lethargic." He adds, "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."
Although she was already confined in the hospital, Rogers says that Rumer's illness was not diagnosed right away. The musician discloses that it took a number of tests to figure out what was wrong with his daughter who was then "put on a feeding tube pretty early on because she couldn't eat or swallow." Rumer eventually stopped breathing, causing the medical experts to "put her on a vent." Rogers states, "It was a six-day process. It was heart-wrenching and grueling not knowing what was wrong."
When the results of her tests came, it was found that Rumer suffered from nonketotic hyperglycinemia (NKH), a rare genetic disorder. "Chelsea and I always thought that we were two peas in a pod," states the musician. He adds, "Turns out literally we are, genetically; we have the same exact recessed gene. The odds are astronomical."
According to NKH International Family Network, the NKH sufferers "cannot make an enzyme that is used to metabolize, i.e., break down, glycine." This illness is a unique genetic disorder that latches on 1 out of every 60,000 children born. Experts say that this condition, or defect comes from each parent, while "there are some cases where mutations cannot be found in one or both parents but this is rare."
The symptoms of NKH among children generally include seizures, low tone, and severe problems with learning and development could severely influence the learning ability of the patient as well as his or her capacity to accomplish "normal things" such as walking, eating, and sitting, according to the abovementioned organization. The organization adds, "The seizures can be so severe that they are hardly controlled despite the use of several medications for seizures. Not all children are equally affected."
