Support Evander & Atlas: Rare Disease Medical Fund

Evander (5) and Atlas (3) are two incredibly brave boys facing a rare genetic disease called Blue Rubber Bleb Nevus Syndrome, caused by a variant in the TEK gene. This condition means they have multiple venous malformations throughout their bodies, putting them at high risk for bleeding, chronic pain, and inflammation. Over the next 6-9 months, both boys will undergo a series of surgeries at Children's Mercy Hospital to remove these AVMs, along with ongoing specialty medication management that is essential but very costly.

Evander has faced significant challenges with chronic pain, sometimes unable to walk due to the severity. He’s been in and out of the hospital recently with GI bleeds and a pneumothorax—serious complications of his condition. Despite years of anxiety around medical care, Evander has shown incredible maturity and courage as he’s overcome many of his fears. Atlas, though only three, has already undergone multiple sclerotherapy procedures for an AVM in his lip and continues to show remarkable strength and resilience.

As their mom, I will need to take time off work to be with them during their hospital stays, which adds to the financial strain. Everyday expenses like rent, utilities, groceries, and travel to and from the hospital are becoming overwhelming. Our family’s circle is small, and we’ve experienced a lot of loss in recent years. The boys’ dad also lives with BRBNS and faces his own health struggles. Any support from our community would mean everything to us. We want nothing more than to see Evander and Atlas free from pain and able to enjoy their childhoods. Your kindness and generosity will help us cover medical costs, essential living expenses, and give our boys the best chance at a brighter, healthier future.