(Photos by Lee Talbert/Johnson City Press)
Thursday afternoon, Fall Branch resident Crystal Morelock’s power went out.
With volatile weather in the area, this is a common occurrence, but with Morelock’s 7 1/2-month-old son RJ, who suffers from a disease called spinal muscular atrophy, a genetic muscle disorder causing extreme weakness, no electricity makes a power outage a life or death situation.
RJ’s disease requires him to constantly be hooked up to a ventilator. His mother said if her happy baby isn’t, he has extreme difficulty breathing, gets anxious, and finds himself struggling to regain the ability to breathe. Transfers from one spot in the house to another are the only moments when RJ isn’t hooked up to his ventilator, and home nurse Kim Sexton, from ProCare in Johnson City, one of the 24-hour nurses provided to the Morelocks, says his time off the machine at most will reach two minutes.
So, when the power went out, Morelock called the provider, American Electric Power, and was slightly worried to only receive an automated message.
“With the help of (Sexton), we held it together,” Morelock said.
She and her husband, Henry, immediately put some gas in their generator and brought things up to speed. Morelock said she kept going on her smartphone to get updates from the company’s website, and after an automated call came in saying that the power would be off until noon on Friday, the family braced themselves for an overnight with RJ’s ventilator being hooked up to the generator.
Sexton said, as one of his nurses, she had a descending order priority list of things they needed to take care of with the generator’s power.
“First was RJ’s ventilator, then it was suction, then having heat in the house,” she said. “Having seen situations like this, it’s easier on us than it is on the parents.”
With their priorities in order, the Morelocks and their nurses made it through the night, even without a water heater. A bath is the first thing Morelock wanted for RJ after the power was turned back on.
She said she doesn’t have any ill feelings toward the power company who told her that a transformer had blown. There had been one time in the past when the power went out, she said, but AEP gave its customers a 12-hour warning. Morelock said she was operating on just about two hours of sleep, and spent most of the night worrying about all the cords and tanks involved with her son’s ventilator.
“We’ve had a rough 24 hours,” Sexton shared.
Morelock said people were extremely helpful, including family and friends, and people on RJ’s Facebook page were offering prayers and well wishes. Since a lot of them were coming and going, she was worried about the possibility of people tripping over the cords, and with the potentially explosive oxygen tanks, she couldn’t be too careful. Morelock’s other kids, 11-year-old Jessica Painter, and 17-year-old Lynn Painter, were extremely helpful with RJ and his condition.
Jessica has even showed an interest in nursing, and presented to her class about her brother’s disease. Morelock gets proud and tearful in saying that her daughter has mentioned how she wants to be her brother’s nurse. RJ is a trooper about his situation, and is fascinated by songs, sounds, visual stimulations, and women, Morelock says, joking that her son is quite the ladies’ man with the female nurses.
Sexton said RJ loves watching her as she helps him.
SMA affects about 1 in every 6,000 births, and Morelock said for their primary care doctor, RJ is the first baby with the disorder. Although there is still no cure, Morelock said she’s heard they’re close in developing one for the number one genetic killer of young children.
“RJ’s happy because he’s been used to all this since the day he was born,” she said. He’s been surrounded by SpongeBob SquarePants stuffed animals, curtains, blankets, and even wears a SpongeBob onesie. Sexton and Morelock joke that they’ve watched more of RJ’s favorite television show than they’d like to admit, but are happy to say he’s moving some of his fascination to Mickey Mouse.
Morelock said she couldn’t do it without the help of her sister, Penny Fitzgerald, or sister-in-law, Heather Fitzgerald, or the family and friends and nurses who take care of RJ and the Morelocks.
To learn more about RJ’s condition, check out his Facebook page: Asking for Prayers for RJ Morelock, which currently has more than 5,000 likes.