1p36 deletion syndrome is not just another nonprofit organization to me. Ip36 deletion syndrome is a label that has been a big part of who I am and a huge part of my son’s life. My son Josh was diagnosed with 1p36 when he was 3 weeks old. I had no idea how much I would need other families that were also raising children with 1p, but this is a lonely life. Nonprofits like this help bring our families together. It gives us hope and the knowledge that we are not alone.
Throughout this month I will be introducing you to families that have kiddos with 1p36 deletion syndrome. I want you to know how amazing and inspirational these people are. The triumphs and struggles we go through, because of 1p36dsa we don’t have to do it alone.
Now, I would like to introduce you to the coolest kid ever, my son Josh.
Josh is my hero. He is 15 and I seriously can’t even believe I am typing that. How is that possible? My kiddo is growing up way too quickly. J is the quirkiest kid I know. He has the best laugh. His entire body shakes when he laughs and you can’t help but to laugh with him. He doesn’t independently walk but he scoots around our house super fast. He flirts to get out of everything. He loves to dance. He gets more sand on him than you would think humanly possible while only on the beach for a second. He loves Disneyworld and has a huge crush on Joy from Inside Out. His favorite singer is Beyonce and no matter how hard he tries not to dance to her music in front of people he just can’t help himself. He throws anything and everything when he is finished with it, because he knows it drives me crazy. He has never believed in going to sleep at a normal time and no matter how hard I try he refuses to fall asleep before 2am. He understands my humor whereas most people do not and I understand him even though he doesn’t have a voice of his own. We are a perfect team. He melts my heart.
Josh has had several surgeries including 5 spinal surgeries. Recently, he had a grand mal seizure that was so strong it broke both of his hips. I still cry when I think of it. It has robbed him of his ability to scoot and be free. His left hip is not healing and that is pretty scary. If it doesn't heal soon we are looking at more surgeries and the possibility that he may not be able to move independently again. Throughout this ordeal many of our fellow 1p families have reached out to comfort us. They arranged to have a ramp built for us so I can get him in and out of the house. He is now strictly wheelchair bound. They gifted us a meal service so I could stay home instead of trying to figure out how to get to the grocery store. One family came out and mowed my yard while we were in the hospital and another sent toys, books, and best of all chocolate. Many called and texted nonstop and some called just to listen to me cry.This nonprofit is special. They are family. I have been told on a few occasions that the doctors weren’t sure that he would survive the night. He has had more seizures than I can count. I was told that he was possibly going into heart failure when just the day before he was fine. He has been abused by a school aide and a student. He has been made fun of, laughed at, rejected, dismissed, and even though I have seen the hurt in his eyes he manages to be kind and loving. He will always be innocent and that is one of his gifts, No matter who hurts him he will always forgive and he will not hold grudges. Even with broken hips and in excoriating pain he would smile and even at times laugh. He has been through more than any person deserves, but he is still here and he is happy, sweet, loving, and kind. He is an inspiration. I wish I could change the world for him and I am trying. He deserves the best humanity has to offer. He is a true hero.
He is just one reason why we need to donate to organizations like 1p36dsa.org