Saving Jeremiah

Hi everybody. This cutie pie in the picture is my son Jeremiah. Jeremiah is 2 years old and started his life like any other baby, happy and healthy. At about 6 months old, we noticed that Jeremiah was late hitting milestones such as crawling, but as time went on, he made improvements and doctors told us all kids do things on there own time, so we shouldn't worry. We became even more concerned when Jeremiah turned 2 and still was not able to walk or stand unsupported. All tests that came back normal, but it was still obvious that something was not right. Over the last 3 months, Jeremiah began to show significant regression which caused doctors to dig deeper to find the cause. Just a few months ago, he was able to walk with support, crawl, say small words, feed himself, hold his own cup, etc. August 25th, 2017, we recieved the devastating MRI results that showed Jeremiah has a rare, terminal illness; Leukodystrophy. The disease causes the protective coating of the nerve cells to deteriorate resulting in the loss of eye site, hearing, and the ability for your brain to send signals to the body for movement and everyday function. Now, Jeremiah is immobile and can not speak. He can not reach or pick up objects, wave "bye- bye" as he could before, or even swallow on his own. He has severe muscle spasms all the time and has no control over his own movement. Sept 12th, he had surgery to place a permanent feeding tube (G button) directly in his belly to recieve nutrition because he his no longer able to open his mouth voluntarily. There is no cure for his disease and because it is so rare (effecting less than 200 children worldwide), most of his doctors and nurses have never had a patient with it. There is only one pediatric neurologist in our area so we are forced to travel in order to get a second opinion and possibly find other doctors that are more familiar with his illness. Unfortunately, this disease progresses very rapidly and most kids that show symptoms as infants typically don't live past 2yrs. old. Jeremiah is now 2 1/2 and caring for him is a struggle. There is a hospital in Philadelphia that specializes in Leukodystrophy, but his insurance won't cover the bill out of state. My baby is getting worse so they are about to start him with in home hospice care. Unfortunately, we still have bills coming in and I still have to keep a roof over my childrens heads. I don't know what else to do at this point, but I know I have to act quickly which is why I'm asking for help. If we can not save his life, I need to at least be here while he goes through this. I have always worked and provided for my family, but I dont know how I can do that right now. He is in and out of the hospital and if there is nothing more we can do to save his life, I owe it to him to make the rest of his days as happy as possible and not allow him to suffer alone. We recently filed for social security, but that will take 90-120 days to start if he' s approved (which we are not sure he will be here to see) and although it will help, it still will not be enough to cover bills, all of the extra things that Jeremiah now requires. I pray that no one else ever has to go through this, watching your child decline right before your eyes and there's nothing you can do to stop it. Please help me spend the time that my son has left on this Earth, making him feel loved and letting him know that he is not alone. That's all I ask.❤
Sincerly and Eternally Grateful,
The Mosley Family