A North Carolina mom has had to limit how close she gets to her terminally ill son for fear of spreading the coronavirus to him. He has a rare genetic disease and any exposure to the virus could prove devastating.
Khye Jessup, who will be 23 in May, has Hunter syndrome, which gets “worse and worse” over time, his mom, Shelley Mason, told CBS News. He has gradually lost the ability to walk, talk and eat, she said.
“He’s really outlived his life expectancy, but any little cold, or anything he gets, is detrimental to him and lands him in the hospital,” she said.
Even before coronavirus cases were confirmed in Guilford County, where Mason lives, she knew she couldn’t be coming in and out of her home, especially since the virus can be spread by asymptomatic carriers. There are now more than 70 reported COVID-19 cases in her county, according to the North Carolina Department of Health and Human Services. A statewide stay-at-home order was issued by the governor on March 27.
But, as a nurse who usually does home visits, the decision to stop working was hard for her.
“Especially being in public health, you’re supposed to be out there taking care of the community, but with my son in his condition … I just couldn’t risk it,” she said.
Mason would normally hold her son in her lap and cuddle with him, but now, she only gets close to him when she needs to.
“Literally, I’m wearing a mask all day, every day in my own house,” she said. “I don’t get to snuggle and kiss and just love on him because I’m just so scared of giving him something.”
She is starting to feel better about getting closer to him because she’s been home for about two weeks and hasn’t been sick, but she said, “it’s still nerve-wracking.”
She also usually has multiple caregivers helping her take care of him, but she has told all but one not to come anymore. While she’s thankful she’s able to be home with Khye, she said it’s been a challenge to care for him 24/7 mostly by herself.
“He actually has had some pretty rough weeks,” she said. “I was terrified because he started running a fever. He already has a lot of breathing problems and they had gotten worse, so then of course, I was scared of had he picked up the virus.”
He is gradually getting over whatever he had, she said, “but it’s just been like one issue after the other and me constantly on the phone, calling doctors and avoiding going into a doctors’ office.”
Being isolated from the rest of their family and the community is also hard, Mason said. While Khye may not entirely understand what’s going on, Mason said he’s aware of the difference in routine.
“People are always surprised at how much I still keep him involved like playing baseball and football, going to everything out in the community, and I have always been able to tell the difference with just how he looks when we’re out and about in the community and, you know, I’m talking to him, singing to him, dancing with him,” she said. “Even though he can’t respond back, I can just see a difference in his facial expression, so that’s been hard too, just keeping him in the house.”
With no end date in sight, Mason will continue to stay home with Khye, but even though she was prepared, she couldn’t have imagined this situation, she said.
“It’s still nothing like what I expected. It still does not feel real,” she said.