The Diagnosis: Williams Syndrome
Ryder is literally my modern day hero! It was mid-December of 2013. Ryder had just turned two and we were will still frantically looking for answers. The first handful of doctors we had seen had all told us the same crappy news "Ryder was going to die."
Our lives were forever about to change when in walked an older gentleman that smelled just like my grandpa used to. This man started examining Ryder, looked over at us, and said "he has Williams Syndrome." He was older and couldn't figure out how to access google on his computer. I literally couldn't wait to get to the car so I could figure out what this syndrome was!
The Scariest Days of My Life
Shortly there after Ryder desperately needed open heart surgery to save his life, which 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 third day post op, which was when our lives where ripped out from under us and changed forever.
We went out to dinner that night, and had brought Ryder back some of his favorite foods (nuggets + fries) when we quickly noticed something wasn't right. He wasn't able to hold his hand up to his face any longer, and his condition rapidly regressed from there. He could no longer hold his head up, his eyes wouldn't stay still, and he was having tremor movements. In hindsight, I was in the middle of grieving the child we once had. The doctors told us that 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.
Hope For Ryder
In July of 2017, Ryder underwent the first of four brain surgeries. We had some of the top doctors in the US. Going into these procedures with such a low success rate was so scary to us, but we had to take the risk to give our son a better quality of life. It was one of the most incredible things we’ve ever been through. We had researchers from Italy and Mexico who are using all this knowledge and taking it back to their countries to help so many others suffering.
We came out with a 95% success rate to take away the involuntary movements. Ryder just finished up his final surgery hooking up the four electrons to his battery packs which power the device implanted. We are so excited to see all of the endless opportunities this creates for Ryder and so many other kids suffering.