In the fall of 2019, Faith and Daniel were overjoyed to learn that they would soon be parents to twin girls! When it came time for their 20-week ultrasound, they received heartbreaking news: one of their sweet babies had multiple serious genetic anomalies that left her future uncertain. 

Knowing that she would face seemingly insurmountable obstacles, her parents named her after the strongest women they knew! Thus, Joanna Maryam (baby Jojo) came into this world with the names of her grandmothers to give her the strength to fight for her life.

Born prematurely, she was ventilated and received her first life-saving surgery at one day old. She was officially diagnosed with a condition known as VACTERL association during her 80 day stay in the NICU. VACTERL is a condition of frequently associated genetic anomalies where each letter stands for the affected area.

To this day, she has undergone double digit surgeries and has been hospitalized for 2/3rds of her life.

The biggest challenge Jojo faces is the diagnosis of End Stage Renal Disease with 0% kidney function. She is completely reliant on dialysis to stay alive. She spends 15 hours per day receiving peritoneal dialysis treatments. She is additionally supplemented by weekly hemodialysis treatments at the hospital.

Baby Jojo has such a joy for life. She enthusiastically greets everybody she meets with a “hi!” and a big smile. She loves to explore, whether it is taking a walk with mom around the block or strolling the hospital halls to see all her friends. She has the sweetest soul and faces each hurdle with undefeatable spirit.

Dialysis is keeping Jojo alive for now, but she will need a kidney transplant soon to give her the best chance at surviving and living a quality life. Her parents were crushed when they learned that not only does Jojo have a rare blood type, but that no one in her large extended family is a match to donate to her. Her family is now searching for possible donors which can be a long and costly process.

Her family is asking for your help to give Jojo the best chance at life. Please consider donating to the Children’s Organ Transplant Association (COTA) in honor of Jojo for assistance with a lifetime of transplant related expenses.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.