We are making this as our family has hit a very tough time We have had to watch a sweet little boy go from being perfectly healthy and happy to a shell of what he used to be right before our eyes. We've had to watch him lose his ability to speak and understand any and all language. And not just spoken language, but he cannot read or write, he doesn't understand drawings, he cannot point, he can't use an AAC device, NOTHING. He has lost his ability to use a toilet, his ability to feed himself, his ability to play and sing (he used to love to sing). We've had to watch him lose strength in his muscles and struggle to walk more than short distances, we've had to watch him develop seizures. We've had to take him to multiple medical centers across three states to have him examined by everyone from neurology to neuro-genetics (he has had whole genome/exome sequencing done) to neuropsychiatry, to OT, to PT, to SLP'S, to metabolic Specialists, to sleep specialists, feeding specialists, you name it and he has seen them at least once, I guarantee it. After extensive and exhaustive testing from the specialists at Doernbecher, Providence and the Mayo Clinic, we were referred to a team of researchers at the NIH who run a program called "The Undiagnosed Disease Network". All of that testing over the last 3 to 4 years only to be told we don't know what's happening or how to stop it. He has lesions on his brain and he has pediatric dementia, seizures, hypotonia,movement disorders, Chronic insomnia, pseudobulbar affect, and a whole list of other issues. But we are told that these are all secondary diagnoses. They are symptoms of whatever is the root of the problem. Until they know what is causing these things to happen to this poor kid, they can't help him. The little guy's condition necessitates frequent medical appointments , therapies, medication management, home and car modifications and E.R visits, most of our days are spent caring for Ryan to the best of our abilities, navigating work, and taking care of our other four children. With all of Ryan's issues, his father and I have been struggling to stay afloat financially, and it has all come to a head. Little Ryan requires around-the-clock care, and with our other children, it has become nearly impossible for both of us to work outside the home. We are trying to raise money to cover our bills and medical expenses for the next few months, so we can try to catch up and provide the best possible care for Ryan. Any help people can give would be so appreciated by our entire family