Nikki Jones: Chronically ill mother worries for 6-year-old’s future

Six-year-old Adeline Jones is cooking up a storm in her pint-size pretend kitchen.

“Mommy,” she says, presenting her mom, Nikki Jones, 35, with a bowl of invisible liquid, “I made you some soup to make you better. Some veggie soup.”

Jones enthusiastically drinks her imaginary soup, which serves as a welcome distraction from the four needles that are stuck in her stomach. It’s Tuesday, which means it’s infusion day, when Jones receives plasma that helps keep her alive.

Adeline frequently serves as her mother’s helper on infusion day, cleaning the injection site and dressing her wounds with an adhesive bandage once the two-hour process is over. Adeline’s favorite adhesive bandages are the emoji ones, but only those with happy faces.

Sometimes, Adeline pauses to ask the question that always takes Jones’ breath away: “When are you going to get better, Mommy?”

Jones is not ready to tell her the full truth, which is that she’s never getting better. In fact, she’ll be lucky if she’s alive to see Adeline cross the stage at her high school graduation.

“She’s the whole reason I go through the process,” says Jones, who was diagnosed with common variable immune deficiency in March 2016. “If I didn’t have her depending on me, I wouldn’t do as much or try so hard.”

CVID is a rare disorder that makes those affected highly susceptible to life-threatening infections and leaves them with essentially no immune system. Jones has had it since she was a child and been hospitalized more than 100 times. She’s had tuberculosis and meningitis, appendicitis and necrotizing fasciitis before she finally was diagnosed with CVID.

The weekly plasma infusions help Jones’ body fight infection, but there’s no cure for CVID, and vomiting and seizures can be a daily occurrence for her. The average life expectancy for a person diagnosed with CVID is around 45.

“I’m tired, and it’s isolating to be here,” says Jones, a former college athlete and high school teacher who was working toward her chiropractic doctoral degree before her illness caused her to be homebound. “When my whole body hurts, when I’ve been throwing up, when I haven’t been able to be around Adeline, it gets hard.”

Jones and Adeline share their South Austin home with Jones’ mother and sister, who supports the family and will become Adeline’s legal guardian if Jones dies. Adeline’s father is not involved in her life.

Because it is difficult for Jones to leave the house, she and Adeline bond over indoor activities such as crafting, playing board games and watching favorite TV shows. This summer, they set a goal to visit the neighborhood pool, located a block away, 100 times. They achieved their goal and celebrated with a pizza party.

Although Adeline has retained her bubbly, infectious personality, Jones worries about the long-term impact her illness will have on her daughter.

Inside a “worry jar” that sits on the kitchen counter is a slip of paper that reads: “Is my mommy going to be OK?” Adeline created it at Wonders & Worries, which helps support children who have a parent with a serious illness.

Jones’ worries are centered on Adeline and what will happen when she’s no longer there.

“If I was a little girl and lost my mommy, I don’t even know,” Jones says. “When my dad passed away just three years ago, it was crushing. I’m trying to make sure that I leave her with all the tools she would need to navigate this world without Mommy.”

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