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Williams Syndrome Awareness

Meet Ryder! #littlestwarriorwednesday

     Ryder is literally my modern day hero! It was mid December of 2013, Ryder had just turned 2 and we will still frantically searching for answers. The first handful of doctors we had seen had all told us the same news, "Ryder was going to die.” Little did we know our lives were forever about to change, Thank God. In walked an older gentleman that smelled just like my grandpa used to, he started examining Ryder, he looked over and told us, “he has Williams Syndrome". He was older and couldn't figure out how to get google on his computer. I literally couldn't wait to get to the car so I could figure out what this syndrome was!

Shortly there after Ryder desperately needed open heart surgery to save his life. That was a roller coaster of emotions. One of the scariest days of my life was handing over the life of my happy, walking, and talking boy! We had no idea who was waiting for us on that other side. Everything was going perfect the days after surgery. Until the dreaded 3rd day post op. That's when our lives where ripped out from under us and changed forever. We went out to dinner that night, we had brought Ryder back some of his favorite foods (nuggets + fries) we quickly noticed something wasn't right. He wasn't able to hold his hand up to his face any longer.

Things rapidly Regressed in his condition from there. He could no longer hold his head up, his eyes couldn't stay still, he was having tremor movements. In hindsight I was in the middle of grieving the child we once had. They told us Ryder would be a vegetable forever! That was the most devastating news I think I've ever heard. They don't have a good prognosis for post pump chorea.

Just last year our sweet boy underwent 4 brain surgeries to implant his deep brain stimulation implants, that surgery has changed our lives for the better and brought our happy boy back to life.


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