Sustain the Shirai Family
Organized by: Moses Shirai
Moses Shirai via Crowdrise
August 13, 2014
My name is Moses. I am a father of two wonderful children, ages 6 and 9, have been happily married to the woman of my dreams for almost 17 years, and am physically disabled.
When I was 35 years old I began to show signs of a disease called small fiber idiopathic neuropathy. There isn't a known cause, hence the word idiopathic, meaning coming from the arcane, or unknown. There is no cure. Only medications that numb the nerve pain I feel on an almost constant basis. Over the course of the past 5 years, this disease has taken away my sense of touch, leaving me with numbness, tingling, and shooting pains in my hands. It causes such great fatigue that I must use a power wheelchair for any excursion. I literally cannot walk more than 20 feet unassisted. Sometimes the nerve pain shoots down my legs and I fall to the floor in agony. I spend most of my day resting in bed. When I do have moments of energy I use them to play with my children, do small chores around the house, and converse with my wife. She is my caregiver, my soulmate, my rock. When we lost our 1st home she carried on, when the van was repossessed, she stood with me, and when we spent a year homeless, depending on the kindness of others for places to live, she homeschooled our oldest, Jadon, and nursed our toddler, Hanalei. As my disability worsened, we travelled to the Mayo clinic for a third opinion. The answer was the same, live with the disease, treat the symptoms with opiates, and carry on.
Now, as we enter the 6th year of my disease, things are falling apart. We are eight months behind on our mortgage, My mother has done everything she can to help us, now we are a financial burden, as she approaches retirement and should be enjoying herself, instead of worrying about if we can pay our share.
Our situation is dire indeed. I qualified for Social Security as a permanently disabled individual. I earn 25% of what I used to as an office manager. $1,105 dollars a month, plus $540 for the 2 children, and my wife. $1645 dollars, barely pays the mortgage, insurance, and utilities. We qualify for food support. We visit the food shelf monthly to keep food on the table. Here is another twist. My wife is my caregiver. According to the county and state statutes, she can only work 15 hours a week as my care giver. For that she receives $936 dollars a month. Even though I require care far beyond the 15 hours, there is no leeway. Okay, here is the twist, now we are up to $2581 a month, okay we should be able to survive on that. Nope. I must pay $368 back to the county every month, so that I qualify for all the other programs, food, insurance, and food shelf. As a family we must be at the federal poverty line to qualify for support. If we make more money, our healthcare ends, any specialized equipment I need to remain mobile, will not be fixed, replaced, or maintained. My wheelchair alone, averages about $200/year for new batteries and maintenance. The wheelchair van I own, is far more costly. Over the last year, well over $5000 dollars in repairs needed to be made. The county will help with these bills, if I stay on their programs. Otherwise, I am on my own.
As you can see, the costs far outweigh the income. I haven't even spoken about our food, gas, medication,and other miscellaneous expenses. My wife and I don't buy new. We buy the kids school clothes and shoes from the thrift store. Everyday I wake up dreading what past due bill will come in the mail. Every day.
Here is what I would use your donations for:
1. Get current on the mortgage. $5000 dollars.
2. Pay off the handicap van I need, yet can't afford: $17000
3. Start after high school funds for the kids. $5000($2500/ea.)
4. Pay off old debts related to my job loss. Most of this is credit card debt we ran up when we were waiting the 18 months it took to qualify for social security. $7500
5. Give my wife a much needed vacation. From me, and the children. $1500. I am not sugar coating this. Imagine spending 24 hours a day, every day, with a chronically ill patient, then add on top that he is your husband, he doesn't work, he requires assistance, in the bathroom, and pretty much everywhere else. He has gained 45 pounds since his illness started, forgets to shower, is forgetful because of medications, and when you do leave the house,all you do is worry he will hurt himself while you were gone.
6. Add a handicap accessible bedroom and bath to the back of our home. $65000. Now, this is my dream. I used to think everything was so easy. I need room to dress, to shower, to maneuver. Our home is small. I can use my chair to get in the entry, to the kitchen, the bathroom, and then I park it next to near my bed. I cannot enter my kids' bedrooms, they have to come to me. I can't use the living room unless, I get out of my chair, walk 10-12 feet, and take up the whole couch. I really can't sit for long periods, I need to lay. I need an open room to maneuver around in. A desk I can park at. A bedside
parking spot. A bathroom where I can slide from my chair to the toilet, and the shower, and back again, without needing assistance.
Well there's what I am asking. Thank you for listening. Just writing it out, no matter how painful, has been therapeutic.
I welcome questions, comments, and suggestion.
The bottom line is, we need your financial help. I've used up my family's goodwill. I don't see a way out. I have kids I want to raise. They need a father and mother. Not two, overtaxed, over-stressed, over-tired and distracted parents.
Even if we make our goal, there is still so much to be done.