A Warrior in Every Way: Honoring Jordan Reid-el and the Power of Advocacy
How Gilchrist Kids, one devoted mother, and a city came together to celebrate a young girl’s strength
Born with CMV, Fighting with Grace
At just 10 years old, Jordan Reid-el is already a warrior. She was born with congenital CMV (cytomegalovirus)—a virus that most people carry without knowing it, but that can cause severe complications when contracted during pregnancy.
CMV is incredibly common and usually dormant, but if a pregnant person is infected for the first time, the virus can pass to the unborn baby. In rare cases like Jordan’s, CMV caused permanent damage: brain abnormalities, cerebral palsy, epilepsy, failure to thrive, and hearing and vision loss.
“When I was pregnant with Jordan, I had no idea I had CMV,” says her mother, Terri Butler. “It wasn’t something doctors tested for, and unless you know to ask, most people never even hear about it. But had I known, they could have given her medication after birth that might have helped. Unfortunately, we missed that critical window.”
Now, Terri is working with advocates to change that. She’s helping draft legislation to make CMV testing mandatory for all pregnant women in Maryland, ensuring that families get the chance to intervene early—when it matters most.
Jordan’s World: Lights, Music, and Love
Despite the daily challenges, Jordan’s personality shines. She is calm, expressive, and communicates in her own special way—through facial expressions and gentle sounds. She loves music, massages, and star projector lights that fill her room with a calming glow. “She can’t speak, but she lets us know how she feels,” Terri says. “She lights up when she’s happy.”
Due to her condition, Jordan is mostly bedridden and relies on round-the-clock medical care. She uses a BiPAP machine up to 24 hours a day, requires feeding tubes, and is constantly monitored by a pulse oximeter. She shares a basement room with her mom in a home without sunlight or fresh air—a reality Terri is determined to change. “I’ve devoted my life to her care,” Terri says. “But I’m doing everything I can to get her into a more accessible home that meets her medical needs.”
Jordan is the youngest of six siblings—Tavon (25), Tamia (23), Janae (20), Jay-Khalil (16), and Jazmine (14)—all of whom play a role in her care and bring joy to her world. Although not all of them live at home, three still do, and together they’ve created a tight-knit support system filled with love, laughter, and teamwork. “We’ve all learned to pitch in,” Terri says. “Jordan brings out the best in us.”
A Lifeline Through Gilchrist Kids
For the past four years, Jordan has been supported by Gilchrist Kids, which provides compassion and comprehensive services directly to families in their homes. “Gilchrist has been amazing,” Terri says. “They’ve made my life so much easier. We have a nurse who visits weekly, and even the hospice aide who comes and helps bathe Jordan has become like family. We laugh, we talk—we give Jordan real baths right in her hospital bed.”
From monthly doctor visits to equipment, medication delivery, and volunteer support, Gilchrist Kids surrounds families like Jordan’s with the resources they need to care for their children with complex illnesses. “They value what I say. They listen,” Terri adds. “They’ve supported me in ways I never even knew I needed. It’s bigger than hospice—it’s support for living.”
A Holiday for a Hero: Joy for Jordan Day
Terri has turned her advocacy into action—and a celebration. With help from Brown Girl Wellness and support from Mayor Brandon Scott, June 18 has been officially declared “Joy for Jordan Day,” an official holiday in Baltimore.
The first official Joy for Jordan Day will take place on June 18 at Port Discovery from 1–4 p.m. The event will celebrate Jordan’s strength and give her family an opportunity to raise awareness for children like her—those who are often overlooked but deserve to be seen, supported, and celebrated.
“Joy for Jordan Day is about honoring her fight and bringing attention to what she—and so many others—go through,” Terri says. “Even though she won’t be able to attend in person, we’ll be reading her letters from other children and celebrating her in every way.”
How You Can Help
You can support Jordan and her family by donating to Brown Girl Wellness at www.bgwellness.org. Be sure to include “Joy for Jordan” in the memo.
Donations will also be accepted in person on June 18 during the Joy for Jordan Day celebration at Port Discovery.
To follow Terri and Jordan’s journey, find them on TikTok at @butterfliesinjunee and on Instagram at @butterfliesinjune.
