TAAF 4 Kids started first as a separate initiative called The Rylan Project, named for the ever-brave (and always funny), VOGM survivor, Rylan Craig. It is because of the tireless support and love of Rylan's amazing family that TAAF 4 Kids has blossomed. We fully recognize and appreciate that we now serve the whole family, including those who come to us from a place of loss, because of the Craig family's dedication and hard work. We will be forever grateful and truly humbled that they trusted us to serve the pediatric community. And we will forever share the legacy story of one utterly adorable youngster... who just won't stop growing up... our Rylan.
Please enjoy, Rylan's Story.
(as written by Melody Anderson and Family)
Rylan Christopher Craig was born Saturday, April 9, 2011, a seemingly healthy baby boy. By the next day, Doctors knew there was something very wrong with Rylan when he failed to eat and presented with rapid respiration. After a few misdiagnoses, and a transfer to a new hospital, where more tests were run, he was diagnosed with the Vein of Galen Malformation (VOGM) on Monday, April 11th. The hospital told his parents, my brother and sister-in-law, to prepare for Rylan’s death. They were stunned and horrified to hear this news.
After hearing the news from my brother, our family was shocked and terrified by the potential outcome. After multiple family members scoured the internet trying to find any mention or reference to the Vein of Galen, we were able to piece together various limited studies and published articles to formulate some idea of where to seek medical advice and care. This led us to make a connection with a Doctor out of Boston who specializes in VOGM.
After speaking with the Interventional Radiologist in Boston, he made it very clear that Rylan’s best chance for survival could only be achieved by going to one of the very few centers in the U.S. who specialize in VOGM. That doctor referred us to University of California San Francisco (UCSF), University of California Los Angeles (UCLA); and a team of doctors at each facility that specializes in treatments and care of newborns with VOGM. We sent emails out to everyone and were surprised with the quick response from every team. We made copies of all of Rylan’s scans and over-nighted them to all of the centers for VOGM. They all took the time to review the scans and concluded that he was a candidate for surgery, but that he needed to be promptly moved to a center for VOGM to yield his best chance. With each connection we made, we found that there was hope for Rylan after all.
We met with Rylan’s parents that evening at the hospital and handed them a folder with everything we learned. We had email addresses, phone numbers, and appointments already scheduled with specialists. We came armed with rough ideas of what needed to be done to help correct the VOGM. We also knew that Rylan would not get the right care at his current hospital and needed to be moved as soon as possible. The most prominent sign of VOGM is heart failure, which develops quickly as the massive amounts of blood shunting through the Vein of Galen pours directly back into the right atrium of the heart. For Rylan, heart failure had already set in and his vitals were not getting better. My brother and sister-in-law chose UCLA, as it is an hour or so from their home, and time was beginning to run out.
Rylan was transferred to UCLA where doctors determined that they could not operate in his current state of health. In order to prepare his heart for the procedure to correct the VOGM, they opted to better stabilize him and get his vitals up over a few days. The NICU doctors worked through the weekend to improve his BNP and potassium levels, so that he could undergo the embolization procedure first thing Monday morning. The urgency of the procedure was to address the heart failure, but also give Rylan the best opportunity for a normal Neurological development due to the fact that his brain showed no signs of “Steal” phenomenon and no apparent atrophy.
On Monday April 18, 2011 Rylan underwent his first embolization procedure with Dr. Vinuela of the Interventional Radiology Department at UCLA. The procedure lasted longer than anticipated, but we were given multiple updates throughout the procedure. After a nerve racking five hours, we were given good news. Dr. Vinuela was able reduce the flow of the malformation by ninety percent utilizing the combination of coils and composites.
We hope that Rylan’s story will help other families of those who are affected by this rare medical condition. Ultimately, via The Rylan Project, we hope to provide a centralized resource and easily accessible site to provide a better understanding of the Vein of Galen Malformation.
I decided to create The Rylan Project for a few reasons. There is a face my Father made in 2002 right before he passed away - his expression looked lost and slightly hopeless. I vowed that I would never let someone I love feel that way again, and when my brother came out of the hospital room wearing that same face, I knew I needed to dig deeper into the problem. I knew that I would help advocate for the right treatment for Rylan. Being a Mom myself, I knew that I would want someone to do the same for me, so that I could spend what could be my child’s final hours with them, instead of on a computer.
After Rylan’s success, I felt that I needed to help pay it forward. I wanted to do something to help prevent anyone from feeling absolutely hopeless in a similar situation. The Rylan Project’s objectives are to help families advocate for their children, educate as many people as possible about pediatric AVM, and particularly VOGM’s, and to push hospitals and doctors to research treatments before giving out mortality rates. We want to help people get in contact with the right sources, so that they are getting accurate information and help. Most of all we want to give hope to families that believe there isn’t any.
It is with pride and excitement that I get to watch Rylan grow and change with each year, and it is with those same emotions that I watch as The Rylan Project develops into TAAF 4 Kids. TAAF 4 Kids will be the hope and support so many families need. We are beyond excited to see The Rylan Project grow into its next phase.