BALTIMORE — It's the middle of the day and Jordan Reid-el is napping after a sleepless night. Jordan's mom, Terri Butler, watches her pretty much around the clock, with the help of grandma Patrice and their extended family.
WATCH: Local nonprofit aims to help terminally ill child move into more accessible home
Ten-year-old Jordan was born with cerebral palsy, epilepsy and an infection called cytomegalovirus, or CMV, that went undetected for months after she was born. Terri, a mother of six, says she knew something was wrong with her baby.
“The girl would stand,” Terri says. “She would walk a little, bit but we had to pull her arms out literally like this to get her dressed and she was always like this. She wasn't hugging. She wasn't kissing.”
According to the Mayo Clinic, CMV is a common virus spread through contact with body fluids, including breast milk. It can be passed from mother to baby during pregnancy and stays in the body for life.
Early detection allows for treatment. Yet, it can be fatal for people with weakened immune systems like Jordan. Jordan did not get tested in time.
“They said oh, this is not going to progress. Whatever the damage is, is what it is. Right? No, that's not true (points to child).”
In the last four years, Jordan's health has deteriorated significantly. She's in palliative care and requires 24/7 monitoring.
“She is a warrior,” Terri says. “This girl has been through so much and is still joyful. And she is such a fighter.”
The family lives in a rented rowhouse near Pimlico racetrack. Because of their home's layout, Jordan is mostly confined to the basement with no air conditioning.
“We can't enjoy each other with our family,” Terri says. “Holidays come, I never leave her. Dinners… just regular stuff that families do together, we are unable to do.”
Caring for Jordan is a full-time job for Terri, who has school-age children at home. Yet, despite it all, Terri remains joyful, too, relying on her faith.
“Through the Lord,” she says. “The Lord balances it for me.”
Now there's a glimmer of hope for Terri’s family.
Brown Girl Wellness is hosting “Joy for Jordan Day” on Wednesday, June 18, just days before Jordan’s 11th birthday.
It's a way to raise funds so the family can move to a more accessible home and get a vehicle to accommodate Jordan’s wheelchair.
“I feel like a lot of times that she is overlooked,” Terri says. “She doesn't have a voice, per se, to say how she feels, what she wants, what she needs. Right? So just acknowledging her for that day is amazing.”
“Joy for Jordan Day” will be held at Port Discovery Children’s Museum in downtown Baltimore from 1-4 p.m. June 18. To buy tickets, go here.
It’s also been declared an official day by the city.
