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, which he recovered fully from. After that, things changed! The doctors told us we needed to look into treating the AVM, as it was unstable. 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 could 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 unfortunately, Ryan had a massive brain hemorrhage during the first embolization. Three weeks later, the doctors tried to remove the AVM, but could only remove it partially. After six weeks in PICU, he was transferred to TIRR inpatient rehabilitation for approximately 6 weeks. It would take an additional two surgeries to fully remove the AVM, along with additional embolizations. As of February 2019, we can say Ryan is officially "AVM FREE!"
Ryan is currently working out with a trainer and continues to improve. Approximately 1% of Americans are diagnosed with this malformation, making this EXTREMELY 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.
Dr. Roc Chen, and two PhDs are currently performing research at McGovern Medical School in the Houston, Texas Medical Center. They have successfully made a true AVM in mice and are performing much needed research. They have had their work published in The Annals of Neurology and have received an NIH grant recently. It requires significant funds to keep performing this research. Our goal is to raise as much as we can to continue the research.
We realize this is a HUGE undertaking, but with God's guidance, we know that we can ultimately meet our goals.
In September 2014, Ryan had a minor brain hemorrhage, which he recovered fully from. After that, things changed! The doctors told us we needed to look into treating the AVM, as it was unstable. 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 could 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 unfortunately, Ryan had a massive brain hemorrhage during the first embolization. Three weeks later, the doctors tried to remove the AVM, but could only remove it partially. After six weeks in PICU, he was transferred to TIRR inpatient rehabilitation for approximately 6 weeks. It would take an additional two surgeries to fully remove the AVM, along with additional embolizations. As of February 2019, we can say Ryan is officially "AVM FREE!"
Ryan is currently working out with a trainer and continues to improve. Approximately 1% of Americans are diagnosed with this malformation, making this EXTREMELY 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.
Dr. Roc Chen, and two PhDs are currently performing research at McGovern Medical School in the Houston, Texas Medical Center. They have successfully made a true AVM in mice and are performing much needed research. They have had their work published in The Annals of Neurology and have received an NIH grant recently. It requires significant funds to keep performing this research. Our goal is to raise as much as we can to continue the research.
We realize this is a HUGE undertaking, but with God's guidance, we know that we can ultimately meet our goals.
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