Hello and welcome! My name is Chaiah. I am a 65 year old disabled American woman who suffers from several autoimmune diseases that cause me to experience significant nerve pain, muscle weakness, musculoskeletal issues and chronic progressive lack of mobility. I have cEDS (connective Ehlers Danlos Syndrome), vEDS (vascular Ehlers Danlos Syndrome), Sjögren’s Disease, IBD (irritable bowel disease), Complex Migraines, Fibromyalgia, Neuropathy I’ve had over 20 surgeries, several of which were to reconstruct soft tissue that deteriorated due to Ehlers Danlos. My shoulders and hips dislocate spontaneously because of Ehlers Danlos. I can’t stand for any longer than maybe a minute without experiencing severe and unrelenting pain.

I only have a standard wheelchair right now but I have a great deal of difficulty properly maneuvering it on my own because of my shoulders. My old motorized wheelchair gave up the ghost last year and being without it has caused the quality of my life to decrease. My chair raised me up so I could reach cabinets in the kitchen or get clothing out of the closet. It allowed me freedom I did not have for almost 10 years. The standard wheelchair is functional but it just cannot measure up. The problem? I can’t get a new motorized chair paid by insurance unless we get the house handicapped accessible. My chair will help me be more independent while allowing me to focus on being more healthy.

I currently provide daily care for my disabled adult daughter, Anna, who requires a great deal of assistance in her everyday life. Anna is 38 and is afflicted by ASD, severe ADD, Major Depression, Anxiety, Schizophrenia, and she has a 30% brain lag in her frontal lobe. This causes her to have difficulty processing language. The lag also affects executive functions (reasoning/decision making).

Getting the house fixed so I can get in and out of my house with greater ease would relieve Anna of a lot of stress. She does her best to help take care of me and assist me with physical things that I am unable to do, but she deserves to be able to relax as well.

My wonderful husband Jeff is a Level 5 Data Engineer. Self taught. The man is a genius. He works for a major utility company and I am very proud of his accomplishments. He is bi-polar and is on the autism spectrum. He wants to do the work to get things done but he’s had his left hip replaced and we’re getting older… So he’s simply unable to handle the physical exertion involved in such a project.

So, anyway, in order to get my insurance to pay for a motorized chair, I also need a wheelchair lift for our ADA van and lift up to the porch, I will need a wheelchair lift from our sidewalk up to our porch and we also will have to widen our front door and lower the door and lip so I can get my motorized wheelchair into our home. If I have to pay for it out of pocket it would be between My front yard area will also need to be knocked out. This is going to cost ~$50k.

I’ve an apt with my doc the end of this month and I’m going to start the process to get a new chair. I’m so sick of not being able to stand and do it for less than a minute before I start to fall. I’m sick of never being able to go anywhere alone. I just want to go sit in the park or go to the pool. I need some freedom, some dignity and a better quality of life. Thank you for reading my story.

❤️ Chaiah