Eli’s Heart Transplant journey

Hello, my name is Suzie (Eli’s sister) ever since Eli and I were kids I’ve seen him struggle with his health. He was in and out of the doctors and no one knew what was wrong with him. I would see that he was just falling to the ground for no reason. He had a difficult time going up stairs and he ran very slowly; the list goes on. With going in and out of foster care he did not have the best medical team. I would see him go to his doctor’s appointment and he would come back with no answers. After many years he was diagnosed with Emery Dreyfus Muscular Dystrophy; a condition that primarily affects muscles used for movement (skeletal muscles) and the heart. This disease has been with Eli his whole life and is progressive. I’ve watched him go through surgery after surgery. Not one time did he complain. At one point in his journey, he had two casts on his legs for several months. During that time, he had to use a wheelchair to get around. Again, he never complained. His strength through the unpredictable has been very humbling. As his sister I can only stand by and watch, cheer him on and help him the best that I can. With that being said, I can only ask for some help. He’s in the ICU until he has a matched donor for a new heart. He is considered stage 3 and the average wait time for a transplant has been 8-9 months. He’s only allotted 2 visitors his whole entire stay. If any of you know Eli, you know that his bond with his nephew is very important to him and while he waits for a heart transplant, they are not able to see each other. He is also limited on what he can eat or drink while he is in the hospital and not allowed to have many things in his room. As you can imagine with a heart transplant come heft medical bills and a hefty recovery. If you can help in any way that would be appreciated. God bless. ❤️ We will be posting updates and don’t hesitate to reach out ☺️ Eli needs as much support as possible!