At the beginning of June, Randy Rogers and his wife Chelsea became parents to a beautifully dark-haired daughter. Unfortunately, their happiness was taken when their newborn began acting strangely.
In less than a week, the couple had lost their daughter, Rumer Rain.
The Randy Rogers Band singer shared:
“She wouldn’t eat and she wouldn’t wake up. She was very lethargic, she never opened her eyes. We kept getting assurances from the doctors and nurses ├óΓé¼ΓÇ£ 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 ├óΓé¼ΓÇ£ but then Rumer went to the NICU about 8 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.”
The duo learned that their little one was diagnosed with Nonketotic Hyperglycinemia — which is a rare genetic disorder that affects about 1 in 66,000 newborns in the U.S. each year. Unfortunately, there is no cure.
The disease is said to impair the brain which leads to seizures, breathing and feeding difficulties, as well as muscle limpness and lethargy.
With it being so rare, we wondered how the little Rogers ended up with the distressing disease?
The country star explained:
“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.”
No parent should have to go through that. Nonetheless, the One More Sad Song performer seems to be focusing on the positives despite his recent tragedy.
“I’m just so happy that there are men and women so smart and passionate to be able to identify these things. Now because my daughter died and we now know we carry this gene, no one else in our family will have to have that happen to them and science is to thank for that.”
However, Rumer’s NKH diagnosis will not prevent the 33-year-old and his wife from having more children.
The musician relayed:
“We’ll just have to do in vitro fertilization. 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.”
What’s most impressive is how the Texan has redirected his loss into a constructive outlet.
Randy’s 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. Very impressive.
Our thoughts are with Randy and his family during this trying time.
[Image via Instagram.]