Caleb’s Special Needs Trust For Duchenne MD

Caleb is a very special boy. He is smart, funny, caring and a very loving child. He loves babies and the elderly. He loves God, his family and his friends. He also has a terminal disease. Caleb has Duchenne Muscular Dystrophy. It is a genetic disease that causes his muscle cells to die at an accelerated rate. There is currently no cure and no long-term treatment. The disease claims all of it’s victims. Most pass away in their late teens to early 20’s. The disease doesn’t just steal their life, it steals their childhood as well. Most boys show signs around 4yrs old. Caleb has never ridden a bike, climbed a tree, or done many things that are considered normal childhood activities. Caleb has progressed in the disease to the point that we believe he will become wheelchair bound this year. Currently he uses a manual chair outside of the house and a electric scooter at school. He can only walk very short distances on his own. He can not get up from the ground or a chair or his bed on his own. Soon he will require a custom built power chair. One that is necessary for both his health and maintaining as much independence as we can give him. This chair costs $65,000 new! So far insurance is not covering the chair he requires. While we are continuing to apply for coverage, even if it is approved we will have to pay around $6,500 in co-pays on it. We will also need things for the house like lifts, slings, ramps and wider door ways. These modifications will cost us about $10,000. Thinking ahead, Caleb will eventually require 24hr care. This will require either my wife or I to retire (not financially feasible) or work from home. The other option is part-time in home health care. This would be a long-term expense. We also are looking into the feasibility of putting in a small pool. As Caleb’s muscles further deteriorate it is important that he continues to move as much as possible. Since he would not be able to do that on his own, a pool becomes necessary. In a pool, he could still be able to move for several years. This helps with circulation, heart health, taking strain off of his lungs, range of motion and many other benefits. These are therapies he will only be able to get in a pool. Our goal with all of this is to take care of his medical needs, give him the best quality of life possible and to give him as much independence as we can. This disease has already taken so much from him. Thank you for any support that you can give us. You can follow Caleb’s story on Facebook, Caleb Bender - Living with Muscular Dystrophy.
Also, please support:
www.MDA.org www.cureduchenne.org
www.parentprojectMD.org

We have decided that any funds left over in Caleb’s special needs trust after his battle has ended will be donated to these three organizations battling along with our boys. All money donated to this go fund me account will go into his special needs trust. None of this money is accessible by my wife or myself. We also have an advisory council that helps us determine the best way to manage and spend these funds.