Meet William and Nancy Nauman!
Our very own Rylan Project volunteer, Nancy Nauman, had the privilege of speaking at TAAF Walk 2019. She was able to talk about her son William’s story and how TAAF and The Rylan Project have helped her to keep his legacy going by bringing awareness and advocacy about AVM’s. Check out the video of her speech by clicking the photo below:
I am so honored to be able to speak to you today. Let me tell you about myself. My husband, Josh and I live in Visalia, CA, for those who don’t know, that is between Fresno and Bakersfield, CA. Today, I want to tell you a story of bravery and a legacy of care. I am here to tell you about our son, William.
After three years of trying to conceive, William came into this world on November 24th, 2017 at 10:42 am. The doctors quickly realized something was wrong with his heart. He was life flighted to Stanford Lucile Packard Children’s Hospital, it was then his doctors found multiple AVM’s in his brain (at least 4, we were told). After trying medical intervention for a few days, the doctors consulted with the neurologists and his team of other specialists and decided surgery to repair the AVM’s would be best action because of the impact the AVM’s were having on his heart. William had three embolizations within two weeks, but each time they did surgery another AVM would pop up. Unfortunately, during the third surgery, one of the AVM’s hemorrhaged that caused William irreparable brain damage to his brain stem. On December 16th at 10:50 am, being held by his parents and surrounded by family and close friends, William took his last breath and went to be with Jesus and meet those who were waiting for him in heaven.
During his short life he was, like his mama, a teacher to so many. He taught the doctors more about a rare condition that will hopefully lead to more understanding and treatment for others. In our family, we say "no matter what;" William taught our family how amazing they are together and that they support each other no matter what. Finally, he taught his parents how to be brave. Although William was only with us for a short time, he entered and left the world knowing he was so incredibly loved.
The care from the medical community was amazing. The doctors who took the time to explain terminology, diagnoses, and to answer questions so we understood his care. And especially the nurses (Happy Nurses Week next week to all you nurses out there BTW). They were our rock and allowed us to have experiences of holding William, changing him and bathing him, memories that we will have forever.
William’s story doesn’t end there, however. His story lives on because of the legacy that TAAF has helped us create for him. It is because of the love showed to William and our family by everyone that we met and the care our family received, that we decided to pay it forward with the William Be Brave Project. This project works to bring kindness to others with Random Act of Kindness Cards, Be Brave Book Drives and most importantly, to bring awareness about AVM’s and support to the AVM community. We started this project as a way to create a legacy for William. But, what we didn't know was that William had bigger plans for his legacy…
In learning about TAAF, I was connected with, the amazing, Dina Chon and learned all the amazing ways TAAF supports the AVM community. My first involvement was when I attended Rare Disease Day at the capital. It was amazing to see people advocating for rare disease and especially advocating for people they may not know in order to make their lives better. I drove four hours to meet a man, Jesse and his daughters, who lived in the same town as me, who was dealing with an AVM. It was truly amazing to see all the people who understood what we had dealt with and the warriors who continue to fight. We truly are United and Rare. This helped me to see that part of William’s legacy was to advocate for children and adults like him; to use his story to create change.
I then attended this walk last May. It was a wonderful experience of seeing my family, all 16 of us, come together as well as other groups for a common cause. We experienced such love and care by many. For example, a man I didn’t even know, James Larken Smith, came and gave me a stuffed bull, that he had used to help him deal with his diagnosis. We had a wonderful conversation and I felt so much love at the event, I didn’t want to leave. This is the type of legacy of care I found at TAAF. We care and support each other, whether we know them personally or not.
I was so motivated at the TAAF Walk, I wanted to get more involved and continued discussions with Dina about how I could work with TAAF. That is when I learned more about The Rylan Project: the Pediatric Initiative of TAAF. I then attended their Superhero Fun Run in Riverside, CA and I was hooked! With talking with Dina, I jumped on board as a volunteer, using my teacher and technology skills to promote the project on social media and work with Dina, the founders, Shelley and Melody, to further the mission of The Rylan Project.
Being a part of TAAF and The Rylan Project has helped me find purpose in my grief. Like any parent, I continue to care for William. I care for him by keeping his story alive. I keep his story alive with AVM awareness, advocacy and creating a legacy that will help others on this AVM journey. I am proud to be a part of TAAF’s legacy. TAAF not only brings awareness, advocacy, research and resources, but they bring together a community of medical professionals, AVM and Aneurysm Warriors, Survivors, Angels, caregivers and their families. These people care for each other, support each other and truly are a family. We are a family! No matter what!