My name is Trisha Sprayberry from Aloha, Oregon. I am, a writer and an advocate for disability equality previously featured here in The Huffington Post, and just like the millions of my impoverished disabled fellow Americans, to be frank, I could use a crowdfunding miracle. I have been hesitant in writing this piece, I didn't want to honestly because it feels so selfish. But after a lot of discussions, a dear friend of mine reminded me of the key for growing awareness to a cause, "The best way to advocate the challenges of living life being poor with a disability is to just tell your own story, to put it out there. If after that, people want to make a difference, they will."
So here it goes. I am 36 and I have a 14 year old daughter, Adara. Both she and I have FSH Muscular Dystrophy, a genetic progressive muscle destroying disease. We are also fortunate enough to have my best friend of 8 years, my partner, and my caregiver Erin in our lives. He has been a Godsend for my daughter and I to retain a mostly normal family life and home together because I cannot afford the extravagant cost of 24-hour home health care. I have been wheelchair bound for the last four years after I took a fall that broke my hip while I was running errands on my way into a grocery store parking lot.
I will be honest, things haven't improved much since that day and this year has been really challenging for us already due to the significant progression of my disease and my continual loss of strength and abilities.
My FSH Muscular Dystrophy has progressed to the point that I have lost half of my body mass due to muscle loss in the last six months, and I have arthritis, which makes Oregon's near year round cold and wet weather intolerable for me to be out in. My lungs seize and my body stiffens when the temperature is below 50 degrees. I have asthma and moderate breathing issues which I treat with inhalers and a nebulizer. I get chronic ear infections from the damp climate that has required 3 surgeries for ear tubes and caused a 20% hearing loss in my right ear. I had pneumonia for the first 5 weeks of 2016, forcing me to drop out of college, and I have allergies to pollen, grass, dust, and mold, and now require live-in assistance with my daily and personal life. To drive and assist with my transportation to appointments, shopping, house cleaning, cooking, and personal grooming, as well as to help raise my daughter.
My daughter and I rely solely on Social Security benefits which are very minimal, I receive about $740 a month for myself, we are living in a 2 bedroom housing unit provided by Washington County Housing (not the vouchers/section 8), we receive $16 dollars a month for food stamps, and have no savings.
The good and sad news came a few weeks ago when Erin got a job offer in Las Vegas as a Fabricator that he cannot turn down since getting reliable work in the last couple of years has been hard to find. The only work he has been able to land in the last two years was a seasonal job at Spirit Halloween and Spencer's this last year. Erin will need to be in Las Vegas by the first week of May. He will start this new job immediately after he arrives.
And, instead of leaving my daughter and I for this great new job opportunity, (and without any help), Erin has offered for Adara and I to move with him to Las Vegas. The move without us would not only be devastating to Erin, but also for myself and my daughter, as we have built our unconventional family together and can't fathom living without one another. Not only that, I would lose my caregiver, and I have no way of replacing his help. And let's face it, the warmer desert climate would really be better for my health issues.
I will admit that we are desperate. Erin has been out of work for most of the last two years, and having a growing teen is expensive, which leaves nothing for savings. This move to Las Vegas is more than just Erin getting a job, or allowing me to keep my caregiver and stay in my home with my daughter, it's also about having a shot at giving my child a better future, and having her childhood to just be a kid, before her own FSH Muscular Dystrophy progresses more and she loses abilities because of this muscle disease instead of having to worry about helping mom out.
The other challenge with this move is accessibility. Since I use a wheelchair to get around, we can't just rent any place we find that happens to be available for us to move into in Las Vegas. Unfortunately we require a home with wide hallways and doorways, an accessible bathroom (toilet and shower), and no stairs.
The three of us share a piece of the same heart, and life moving forward without Erin in it just wouldn't be the same with a piece of it missing. We would do anything for one another, including making this 1000 mile move for Erin, and all of us, to have a shot at a better future life together.
With our dear friend Valerie's help, we are organizing a multi-family garage sale at her house for the next two weekends. There have been multiple people who have donated items for this garage sale and Erin and I will be liquidating all of our belongings to lighten our load to haul from Oregon to Las Vegas and to raise funds for this move, but I am afraid it won't be enough to cover the costs. We don't have a lot of things in the first place, but we have to do something to make this move happen.
Please help us reach our goal of moving to Las Vegas by sharing and donating. And if you are in the Hillsboro/Aloha area this weekend or next, please stop by, say hello, and check out our garage sale. Every a dollar adds up! Thank you.
GoFundMe Link: https://www.gofundme.com/4ryv8enr