Disability Grant For Stephanie To Better Treat Spinocerebellar Ataxia 2
by Stephanie Bland
(Alexander, Arkansas, USA)
Hello. My name is Stephanie Bland. I am a 35-year-old mother of three beautiful little girls, ages 3, 6 and 10. I am very fortunate to have a wonderful and caring husband.
We live with my mother, who is the most understanding and compassionate person that I have ever known.
I love to spend my spare time making others feel better and helping out at my daughters' school. I have a Masters' degree in Traditional Chinese Medicine. I use this knowledge to help others through acupuncture and herbology.
I am also a member of the PTO, a volunteer and a substitute teacher.
In December 2014, I was diagnosed with Spinocerebellar Ataxia 2. It is a debilitating genetic disease that starts off with balance problems, gradually affecting fine motor skills and cognitive abilities, then walking, eventually requiring a wheelchair.
It affects the throat, causing slurred speech and choking on everything including air.
Throughout my childhood, I experienced bad balance but I attributed it to having "bad knees." In 1996, I had surgery on both knees, but my balance only got worse.
While in college, I noticed my handwriting was getting much worse, and sometimes I was incapable of even holding a pencil.
I now know why I have had these problems my whole life. Even though there is no treatment or cure, I am still trying to better my life.
I am using my knowledge in Chinese Medicine to prescribe myself an herbal formula.
I have recently joined a gym, because research says, "use it or lose it." These things are helping if only minutely.
Not only is this a genetic disease it is also hereditary. In my lifetime, I have witnessed five relatives experience this disease.
In April 2015, we became aware that all three of my daughters also have Spinocerebellar Ataxia 2.
No parents want to watch their children experience so much hardship.Financial Hardship
Fine motor skills are one of the first problems an Ataxian experiences. Since my degree revolves around my ability to manipulate acupuncture needles, I am quickly losing the ability to work in my chosen field.
While obtaining a Masters' degree I accumulated over $140,000 in student loans debt.
Even though I also substitute teach, I am unable to legibly write, especially on the board. As of now I ask students to write, or on breaks I ask a neighboring teacher to write it.
Currently my family lives in Arkansas. Unfortunately there is no way of treating the condition here.
My neurologist, who is a Movement Disorder Specialist, told me there is no treatment, but don't lose hope because medical research is advancing quickly.
As a result we want to relocate to Southern California, because there is an Ataxia Specialty Clinic at UCLA.
I realize that chances are not very high that a new breakthrough can help me, but hopefully it can help my daughters.
Because public schools in California are not very good, especially for middle school, unless we can afford private schools, we are going to home-school our children.
I am going to be unable to do acupuncture there anyway, because they require a different license and my condition affects my driving.
I would like to spend as much time with my children as possible anyway.
I would like to continue going to the gym and taking my Chinese Herbal Formula. Unfortunately my insurance doesn't pay for them.
I only make roughly $60-80 per month doing acupuncture. Right now is summer break, so I am not substituting at all.Income Efforts
I make some money through acupuncture and substitute teaching.
I am currently in the process of acquiring my medical records in order to apply for Social Security Benefits.
I receive approximately $700 a month in Food Stamps.
My husband is a Real Estate Home Inspector. He makes approximately $2000 a month.
We live with my mother. She helps us out whenever she can, although she is 100% medically disabled and on a government pension.Specific Needs
Because we need to relocate to Southern California, we need assistance for housing and moving costs.
I would also like assistance paying for Chinese Herbs and a gym membership. My herbal formula is $53 a month. My gym membership is $20 a month, but when we move I'll have to pay start up costs too.
Since the number one problem Ataxians face is depression, I have created a "Will Do List" consisting of things I want to do while I'm still able to.
Several things on my list require little-to-no money but some do, such as traveling and getting my bachelor's degree.
I want to get a BS degree for several reasons, aside from just being on a list. I want the mental practice, so I don't lose cognitive ability as fast.
I want to be a good influence for my daughters, and show them that this condition doesn't have to control your life.
It would be easier to enjoy life without $140,000 in student loans hanging over my head.Business Idea
I would like to start a business with my mother, planning baby showers. I've been to so many showers that were not fun because the hostess didn't have the time or creativity to throw a fun baby shower.
Personally I've had five showers, all of which were fun. I've made a list of more than 50 shower games.
In addition, my mother makes diaper designs. It started as cakes and wreathes, then carriages, now she makes babies, tricycles, teddy bears, and much more.
This business idea has more potential in CA. More people there are willing to pay someone else for a service they don't have time for.