Our baby boy Jackie was just diagnosed with a rare genetic condition that results in a central nucleate neuromuscular disorder. Unfortunately, there is no cure and no treatment. It prevents his muscles, including the ones used for breathing and swallowing, from functioning. He has been at Minneapolis Children's Hospital since his birth in July 2020 and recently underwent surgeries for a tracheostomy and a permanent feeding tube. When he comes home, he will permanently be on a ventilator, feeding machine, monitors, and multiple other pieces of medical equipment. He will also need 24 hour in home nursing care. We are fortunate in that our health insurance will cover most of these costs. Unfortunately, our older two story home is not suitable for him. There are only two outlets in his bedroom, which is not ideal for all of his equipment. In addition, the narrow doorways and stairs will not allow us to move him around the house easily, and will not work with the wheelchair he will eventually need. This would help us move to a newer single story home that he can have greater access to. It would also allow us to retro fit that home with ramps so that we can more easily get him in and out with all his equipment. Anything leftover would be used to cover the cost of his medical care above what our insurance covers, including the cost of a specialized stroller and a hospital crib to make caring for him easier. He's such a sweet little guy and we just want him to have access to everything that can make his life a little better.