Ben Holloway was only 3 years old when, on April 8, 2014 at Emory Hospital in Atlanta, Ga, he was diagnosed with a dural arteriovenous fistula (dAVF - exceptionally rare vascular anomalies formed by an abnormal connection between arteries and veins that normally drain the brain). The excess blood on his brain had caused a golf ball sized pocket of blood to form directly behind his left eye. The condition is so rare & fatal in children that there is only one pediatric doctor in the world who can successfully treat it; Dr. Alejandro Berenstein (Dr. B is the foremost expert in the world on treating this condition). Given only months to live, if left untreated, we went to NYC in May 2014. Ben had his 1st brain surgery on May 19, 2014. Ben's condition was so critical that traditional brain surgery was beyond the realm of possibility. Via a catheter inserted into the femoral arterey in Ben's leg, Dr. B inserted platinum coils into the fistula on his brain. Three days later, Ben endured his 2nd brain surgery. This time, Dr.B inserted a type of space-age glue into the fistula to seal it off. Less than 24 hours later, Ben was up and playing in the PICU toy room. Over the next 12 months, Ben endured multiple MRI's (which he had to be completely sedated for) and hospital visits. In June 2015, we returned to NYC for his annual check-up with Dr. B. While performing an angiogram on Ben's brain, Dr. B noticed something that "wasn't right". Dr. B shared the angiogram results with us and told us that Ben's life is in "grave and immediate danger" and that a "3rd brain surgery would be required immediately." Dr. B inserted additional coils into the dAVF and, once again, saved Ben's life. We returned home in the middle of June and Ben started kindergarten at the beginning of August. In December 2015, probably around Christmas, we will have to start going back to NYC every six months for a check-up. This will continue for several years.
There is no where we would not go and nothing we would not do to save our sons life. With that said, Dr. B is considered "out-of-network" with our insurance provider. This means we are responsible for 50% of the bill with no out of pocket max. Between the lengthy hospital stays, testing, multiple brain surgeries and travel from Atlanta to NYC and back, Ben's medical bills are starting to grow exponentially.
All money donated will go directly to help us cover medical bills, travel expenses, etc. Thank you so much for any and all donations you give to Ben. More importantly than money though, thank you for continuing to pray for our family.