A Place for Ryan

A Place for Ryan

From Amanda Johnson

We are raising money to begin our lives again. In March Ryan will be discharged from a head injury rehabilitation center and we will need to create a new normal for ourselves after an unexpected turn of events.

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My fiance Ryan has carried a condition with him throughout his life characterized by something called cavernous angiomas. These angiomas are blood vessels with bubbled thin walls that ooze or bleed in certain areas of his brain and cause a variety of symptoms based on where they are located. On July 28th of last year Ryan suffered a hemorrhagic stroke at his brainstem rendering him completely unable to move with the exception of his right thumb and his right toes.

At the time, we were fortunate enough to be doing an experiment that consisted of us selling all of our belongings besides what could fit in our car. We were living at a campground for the summer, working locally in the Berkshires of MA, and paying down our debt. When Ryan was complaining of a severe headache one evening we quickly discovered that one of his angiomas had bled, only it was located at the pons; a much more severe bleed than anything he had ever experienced. Within hours, Ryan was completely immobile. We left the Berkshires, he was airlifted to NYC and we haven't been back since. He has had a variety of complications along the way and three brain surgeries since July. I am grateful to have stayed in each hospital with him since then, advocating for his needs when he couldn't speak and being by his side through this unexpected event. Neither of us could picture it any other way and our unique living situation over the summer had allowed for me to be with him 24/7 without having to worry.

Ryan will be discharging from a subacute rehab on Long Island in March. We will need to continue to obtain a legal residency in New York in order for him to keep the insurance that his current surgeons and doctors are covered under. When he goes home I will be paid through a program called CDPAP to take care of him full time. The CDPAP program also states that we must both have legal residency in NY. We found ourselves scrambling for a safe place for him to discharge to, until we thought of something we'd been talking about for years; building a tiny home. Through a company called Chatanooga Tiny Homes, we have made plans for a completely custom and handicap accessible tiny home. Not only will this give us the opportunity to create a safe and permanent residence as opposed to a lease, but it also breaks down financially in our favor. With a 25 year loan we would have a much lower monthly payment than any rental or home purchase in NY state. We hope to purchase a small piece of property only an hour outside of Manhattan to stay close to Ryan's doctors while also meeting all of the criteria for his benefits while he is recovering. 

We both have a very long journey ahead of us. Although Ryan has a history of these bleeds his doctors never expected to one of this magnitude. It has turned both of our worlds upside down in so many ways. Having somewhere to go home to and continue recovery after these past 5 months is going to be invaluable to both of us. If all you can do is send us your encouragement and share our story we thank you for that, as we have learned what a difference positive thoughts, prayers, and emotional support makes. If you can help us meet our financial goal, no words would be able to describe our gratitude or the difference it would make for our future. Thank you.

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