Help Xander Overcome WAGR Syndrome & Wilms Tumor

Meet Xander—a sweet, strong, and resilient little boy who has already faced more challenges in his first year of life than most do in a lifetime.

At birth, Xander was diagnosed with Aniridia, a rare condition that affects the development of the iris in the eye. A month later, genetic testing confirmed that he has WAGR syndrome, an extremely rare genetic disorder that increases the risk of multiple health complications, including Wilms Tumor, a type of kidney cancer.

WAGR syndrome is so rare that very little research exists, and Xander is currently the only child in the entire nation his age with this diagnosis. Since birth, we have closely monitored his health with routine ultrasounds every three months to detect any signs of kidney and bladder complications. Then, just days after celebrating his 1st birthday, doctors found a concerning spot on his kidney. Further testing confirmed our worst fear—Xander has Wilms Tumor.

Xander will undergo six weeks of chemotherapy at Cincinnati Children’s Hospital to try and shrink the tumor. Because WAGR syndrome is so rare, his specialists are being extremely cautious—they want to avoid removing his kidney if possible, as there’s a risk cancer could later develop in the left kidney, putting him on the transplant list.

After the initial six weeks, doctors will reassess. If the tumor is shrinking, he may need an additional six weeks of chemotherapy before surgery. To begin treatment as soon as possible, Xander is being admitted tomorrow. He will have a PICC line placed and is expected to start chemotherapy as soon as possible.

We are incredibly grateful for the love and support we’ve received from our family, friends, and community. Your encouragement, prayers, and kindness mean the world to us as we navigate this difficult journey. Sharing Xander’s story helps spread awareness of WAGR syndrome and ensures he gets the best possible care.

Thank you for standing with Xander in his fight—your support gives us strength and hope.