Jaleel’s Story
Jaleel’s Story
Shared by his mother, Tanisha Burke-Wormley
The Beginning
Jaleel’s journey began before he was even born.
At 20 weeks pregnant, during a routine anatomy scan, Tanisha learned that her son had a rare condition called lower urinary tract obstruction (LUTO), also known as bladder outlet obstruction (BOO). This condition affects the urinary tract and can cause significant damage to the kidneys.
From that moment on, their family’s path changed, entering a world of uncertainty, medical complexity, and early advocacy.
The Challenge
After birth, Jaleel spent six months in two NICUs. As part of his discharge plan, he required a peritoneal dialysis catheter and was diagnosed with Stage 5 chronic kidney disease (CKD).
For the next three years, Jaleel underwent home dialysis.
“It wasn’t just the medical care, it was learning how to live in a completely new reality,” Tanisha said.
Knowing that a kidney transplant would be essential for Jaleel’s quality of life, Tanisha made a powerful decision, she began sharing his story publicly.
Through social media, she documented their journey, hoping to raise awareness, build community, and ultimately help find a life-saving donor.
Finding Strength
Shortly after Jaleel turned three, that hope became reality.
He received a kidney transplant from a deceased donor.
Today, five years later, Jaleel is thriving with his gift of life. He is now 8 years old.
Throughout their journey, Tanisha found support through multiple communities and organizations, including learning about IROC through Arkansas Children’s Nephrology department.
But their story didn’t end with transplant.
An Unexpected Turn
Despite a successful transplant, Jaleel faced another serious challenge.
Due to the immunosuppression required after transplant, he developed post-transplant lymphoproliferative disorder (PTLD) linked to Epstein-Barr Virus (EBV). This resulted in early-stage cancer in his liver.
“It was something we never expected. You prepare for transplant risks, but not for something like cancer,” said Tanisha.
Thankfully, Jaleel responded to treatment with Rituximab and did not require chemotherapy. Today, he is cancer-free, and his kidney transplant continues to function well.
This experience reshaped everything.
Tanisha says, “It made me realize that even after transplant, challenges can arise. You are constantly learning, adapting, and advocating based on how your child’s body responds.”
Today
Today, Jaleel is healthy, thriving, and continuing to grow, five years post-transplant. His journey reflects not only medical resilience but the power of advocacy, community, and persistence.
A Message to Other Families
“Never stop sharing your story of chronic kidney disease. It matters more than you know.” Tanisha emphasizes that storytelling is not just about awareness, it is a pathway to connection, resources, and support.
“People are willing to help, whether it’s meal trains, hospital visits, or even becoming an organ donor. It can be hard to share your journey, but it opens doors.”
Through sharing, their family connected with organizations like:
These resources helped them navigate both dialysis and life after transplant.
Connect with Tanisha / Medical Moms of NICU
Website: https://www.medicalmomsofnicu.com
Instagram: https://www.instagram.com/medicalmomsofnicu/