Daveion’s Rare Kidney Disease started last year when he was 16 years old and in the 10th grade. He had dreams of playing football. He went for his annual physical to play and his blood pressure was too high for the coach to sign off. Coach recommended we see the doctor to address the high blood pressure. Daveion did not have any prior symptoms that would make us think to check his levels. He had previously passed the standard physicals. 

Our lives immediately changed when his labs and urine sample revealed he had stage three kidney disease. He started blood pressure medication immediately, but his numbers remained elevated and his body continued to spill protein in his urine. After several labs and doctor appointments, the biopsy revealed scarring and that his Nephrotic Syndrome diagnosis became more specific: FSGS based on genetic markers. Daveion has experienced complications such as high blood pressure and body infections. His kidney functions declined from stage 3 to stage 4 in just a few months. We continue to add and remove medications to control the protein spilling and minimize complications as well as side effects. 

Daveion continues to exhibit courage, perseverance and positivity in the face of all of this. We remain hopeful in the next phase of solidifying a donor and conquering the road to come.

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.