Breath In Life & All The Beauty
Meet my beautiful son William at age 12 he was dancing at his brother's wedding with his mother. Never did we dream 4 years later he would be in a wheelchair. William is a gentle, kind, loving, humble spirited young man. Four years ago William was a typical 13 yr old boy running, jumping, playing basketball, not a care in the world. William started having leg pain and started walking a little funny and was becoming very uncoordinated. Doctors contributed it to William growing 6 inches that summer & getting use to those new longer arms and legs. Finally the day of basketball try outs came, William was pumped. Knowing he was the tallest kid in the school he knew he was probably a show in. That was a day as his mother I will never forget. On September of 2009 our lives were turned upside down. William called me just 30 minutes into try outs and said "Come get me, something's wrong with my legs." I got to the school and found a very disappointed young boy was sitting in front of the school. My heart sunk. William got in the car and said "My legs just locked up." I had no idea what was going on but I knew in my heart something was horribly wrong. William is the youngest of 4 children. I always said, "God knew my sanity was on the line when I had my 4th child therefore he gave me the sweetest child in the world." That my friends isn't even the half of it. Within 6 months William was wearing leg braces. Within a year his long term memory was gone. Within two years William couldn't walk or stand for any longer than 15 minutes. He was extremely weak. We had been told he had inflammation in the white matter in the brain, peripheral neuropathy and demylination of the cerebrum, cerebellum, & spinal cord as well as autonomic nervous system dysfunction. What does all this mean? Your brain is the command center for your body to do everything. Messages go from your brain through your nervous system to the different parts of your body, telling it what to do. Those messages are protected by myelin that is a coating throughout your body protecting your nervous system. William's myelin is deteariating which also causes atrophying of the muscles. What was happening to our child and what was this mysterious disease. Still no answers, we watched our son deteriate every day knowing we couldn't do anything. I'm his mom it's my job to make everything better, but I couldn't fix this one. William never once complained. He never wanted any special attention, and tried to hide it from his friends at school because he didn't want them to feel sorry for him. But over the years everyone began to ask "What's wrong with William?" William went into his high school senior year in a wheelchair. He can still walk short distances but it's hard. You see that smile in the photos .... It is always there. When ask how he is doing he always says "I'm Fine". William has been through countless MRI, Spinal Taps, Cutting edge of genetic testing, Countless stays in the hospital, skin biopsy, even a brain biopsy in January 2013. We have tried several treatments such as IVIG and steroid infusions but NOTHING has helped. He has had his vascular tissue of his brain scraped to check for vasculitus. This young man has been through so much and still is always happy. He has touched so many lives by exhibiting such enormous courage and will to continue life no matter the obstacles. He doesn't want pity, he doesn't want special treatment. He wants to live his life as normal as possible There isn't a day he doesn't thank me for everything I do and tells me he loves me. After 4 years under the care of some of the best doctors in the world at Children's National Hospital in D.C. we are being put on the undiagnosed diseases list at NIH. This past week we were told we needed to do William's medical directive and power of attorney. No parent should ever have to do this with their child. Williams's disease is affecting his organs now and as his mother I want to make sure William breaths in life and experience all the beauty in this life before he is unable to. Williams wish is that I take 2 months off work and we rent an RV and start in Virginia were we live and travel down south then across the United States and up the west coast and into Canada and back down. Some of the highlights on his list include enjoying a helicopter ride down into the Grand Canyon, seeing Niagara Falls, Yosemite National Park, having dinner at The Needle in Seattle, Washington just to name a few. Without your help I will not be able to fulfill my son's wishes. There have been so many people saying "What can I do to help?" This is it guys. I want to share this with my son, and just tour the U.S. and LIVE for 2 months. Anyone that knows William and I know it isn't easy for either of us to accept help. However, it's time to put pride to the side and talk from the heart. Thank you in advance for your love and support.
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Mary Anne Bohn Sanders
Stephens City, VA