Our mission is dedicated to celebrating kids ages 0 to 19 years old with the rare conditions Syringomyelia and Ehlers-Danlos Syndrome. Letting these rare kids know that they are not alone and that others are thinking of them.
Our goal is also to bring awareness and education about both syringomyelia and EDS along with the need for better imaging. Once we can get better imaging, our kids will get the care and treatment that is so needed to give them a better quality of life.
Tyler James Wilging-Hathaway was born November 16, 2006. He was a happy child that loved doing all things. When he was young, he would have feet pain and leg pain for unknown reasons, and he began having back and neck pain that was getting worse. When he was eight, while we were playing a card game, he had what he called a “head spasm.” His doctor ordered MRI’s and discovered that he had Syringomyelia from t3 to t11 in his spine. The next five years was filled with doctors. I would not give up and was trying to help Tyler. We had to find out what was causing the syrinx in his spine. There is always a reason for Syringomyelia. Idiopathic just means they have not found the cause.
Once we had the confirmation that he did have EDS, the 11th neurosurgeon that he was seeing had a feeling on the latest MRI that he had done and ordered another one zoomed in on one area. Finally! He had dorsal arachnoid webbing. In April 2019 he had surgery and it was so much worse than what the MRI was showing. The webbing was wrapped about three vertebrae length of his spinal cord. He also believed that he had occult tethered cord in his lower back, but the doctor was hesitant and ended up not responding back to me. I scheduled a different neurosurgeon that specialized in occult tethered cord.
Over the years he lived with severe chronic pain. He was living with a level 8 to 9 pain for so long and no one would help him. On February 28, 2020, a month before seeing the new doctor, he took his own life. He was in pain and tired. Tyler had always dreamed of helping other kids and now he is. I was so blessed to be his mama, and we had so many great adventures together. He has touched so many lives and will continue to do so.