Nikki & Addison Jones
Imagine it taking 30 years to figure out what was wrong with you, and then realizing that there was no cure. Welcome to the world of Nicole Jones, mother of Addison, age 7.
After a lifetime of debilitating diseases including tuberculosis, seizures, necrotizing flesh, meningitis and appendicitis; and experiencing more than 100 hospitalizations for diseases and disorders, Nikki Jones finally received a diagnosis in March 2016.
“I remember thinking, ‘Joy! At last! Just tell me what it is!’” Nikki recalled.
But that joy was short-lived; Nikki has severe combined immunodeficiency disorder, or SCID, a rare genetic disorder resulting in an immune system so compromised that it’s considered absent.
“When are you going to get better, Mommy?” Addison asks.
Nikki isn’t 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. There is no cure, and Nikki’s body will eventually succumb to a virus or infection most adults could fight off without noticing. She is 36 years old.
I’m trying to make sure that I leave her with all the tools she would need to navigate this world without Mommy.”
Since diagnosis, Nikki has endured weekly plasma transfusions at home, consisting of four simultaneous IV drips into her stomach, lasting at least two hours.
If 7-year-old daughter Addison “Addie” is home, she helps by cleaning the injection sites, holding the IV pole and picking out fun bandages for her mom.
Her favorite ones are emoji bandages, but only the smiling faces. Addie’s confidence and comfort of assisting Nikki comes from what she’s learned from Wonders & Worries.
Living with SCID
Since January 2014, Nikki and Addie have lived with Nikki’s sister, “Aunty Sis” and their 70-year-old mother, “Yaya.” Nikki’s sister works to support the whole family. This nontraditional family structure works, as Nikki can’t drive or work, so living alone while caring for her daughter isn’t an option.
A good week for Nikki is three days out of bed, and vomiting only twice a day. “Without Adeline, I wouldn’t do this treatment,” Nikki shares through tears. “It hurts. But she needs me.”
The unpredictability of side effects makes normal “mom” activities particularly challenging. Also, with a compromised immune system and seizures, Nikki can’t swim in a pool, buy groceries at the store, drive Addie to school, etc.
I’m trying to make sure that I leave her with all the tools she would need to navigate this world without Mommy,” said Nikki.
On back to school night, Nikki was too ill to attend and Addie was both sad and frustrated.
“I will wear adult diapers to go out with Addie if I can, but that doesn’t stop throwing up or seizures,” Nikki said through tears. “I felt terrible not being there.”
Although Adeline has retained her bubbly, infectious personality, Jones worries about the long-term impact her illness will have on her daughter.
Adeline created the worry jar at Wonders & Worries. It’s one of the activities child life staff use to encourage communication between children and their ill parent or caregiver.
Inside the worry jar on the kitchen counter is a slip of paper that reads:
“Is my mommy going to be OK?”
A Sense of Humor
Nikki’s body may be failing, but her humor is strong – and evident in Addie.
“Addie told me she wanted a pet rat,” Nikki shared. “I told her, ‘Over my dead body.’ Addie looked at me, cocked her head and said, ‘Wellll, you are sick a lot, mommy.’”
The only pets up for consideration these days are a fish and a hermit crab.
Joy through Community
Nikki and Addie were selected for the 2017 Statesman Season for Caring campaign.
Through the generosity of the Austin community, Nikki was able to see a dentist for the first time in years. Her frequent vomiting decayed her teeth and eroded her enamel. “Everyone used to know me for my smile,” she said.
Nikki and Addie also had the privilege of lighting the Christmas Tree at the Driskell Hotel and spending the night, their first ever vacation together.
Nikki also received a bed from Factory Mattress that allows her to stay upright and for Addie to sleep comfortably with her on good health nights.
Addie was the recipient of a box of girly dresses, dolls and shiny new glittery shoes donated by a girl about her age.
The 2018 Season for Caring campaign begins in November.