Our son Ryan was diagnosed in February 2013 with a Grade 4 Arteriovenous Malformation (AVM) in his brain. He was having headaches, as well as visual disturbances. Initially, we were told no treatments were safe for Ryan's AVM to be removed and we were told to "let him live his life".
In September 2014, Ryan had a minor brain hemorrhage. After that, things changed! We searched all over the country and eventually found doctors at Memorial Hermann in Houston that felt confident they could remove the AVM. He was at risk for having headaches, seizures, and his arteries and veins can bleed spontaneously, which could lead to a stroke or worse. He also had 7+ aneurysms inside his AVM, which made it even more risky. We moved forward with the procedures and Ryan had a massive brain hemorrhage during the first embolization. Three weeks later, the doctors tried to successfully remove the AVM. After six weeks in PICU, he was transferred to TIRR inpatient rehabilitation for approximately 6 weeks.
Ryan is currently in outpatient rehab at TIRR in The Woodlands, Texas. Approximately 1% of Americans are diagnosed with this malformation, making this quite rare. Due to this rareness, there is currently very little research being done on AVMs in the United States. No family should have to go through what our child and family are going through. Thanks to all of your support we have accomplished our initial goal of raising enough funds to hire two PhDs who are currently performing research on mice models in the Houston, Texas Medical Center. They are currently writing manuscripts to publish the new findings and preparing grant proposals with hypotheses based on the collected primary data. We need to raise $2,500,000.00 to help cover the costs of the researchers, lab and lab equipment and supplies. We realize this is a HUGE undertaking, but with God's guidance, we know that we can ultimately meet our goals.