I was born on a nice summer day in 1960. Shortly after I was born my mother knew that something was wrong with me. She worked with the doctors and tried to convince them that I needed help, but the doctors, in their infinite wisdom, would not recognize or accept her plea for help until almost a year later. Because I was developmentally slow compared to other children my age, testing was done to see if something was wrong. Sure enough, they found a neurological condition and told my mother that I would be dead by the time I was seven years old. Fortunately for us, specifically me, they had misdiagnosed me, as they would all of my life. In fact, I never knew what my diagnosis was until five years ago. All I knew was that I've never been able to walk on my own, that I could neither sit up nor stand up till the age of four years old, and that I would need to go to school in a wheelchair. But what did I have? How would it affect me? What was the prognosis? I never knew any of these answers. I just knew that I was in a wheelchair, that I was no longer independent, that I depended upon others for all of my needs, that whatever I had was also affecting my eyes, my hearing, my lungs and gastric system, as well as all of my peripheral nerves and extremities, i.e., arms and legs.
So I lived most of my life not knowing what was going to happen to me, and I still don't know, but for different reasons. I think this not knowing was also a method of strengthening me, so that I may be strong enough to face all the things I face and have faced through all of my life. My strengthening process began when I was very young. When I was born and went to school it was during an age when they did not allow disabled children in school and we were often denied a proper education. So I grew up watching my mother fight for me, so that I may receive a public education. She was successful, but it required hard work and sacrifice on her part and mine. But it was so worth it. By the time I was 19 years old I graduated from high school. Having loved school, and realizing that an education was the only thing that could help me, I decided to pursue an education at the college level and graduate school level. By the time I finished, I had obtained a Bachelor of Arts Degree in Religion, with a minor in Psychology, and a Masters of Science Degree in Rehabilitation Counseling.
I had wanted to work as a chaplain in a rehabilitation center or hospital, helping people with disabilities overcome their circumstances to live in society as independently as possible. I am firmly convinced that my disability is not a curse, nor is it random. I am blessed by God, because He knew and still knows that I could and still can face the difficulties that would arise and still do arise in my life, and through my disability and faith He knew I could show others how they too could survive and live and come to Him as his disciples. It was my faith and is my faith that keeps me strong in everything and keeps me going day by day, living for my Lords promises and having great hope in Him.
However, this was not to be. No seminary I applied to was wheelchair accessible, so I had to reevaluate my own future. Why was my disability once again interfering with everything I believed I wanted. Well, God has a sense of humor. Instead of going to seminary and becoming a chaplain, He put me in graduate school and help me to become a rehabilitation counselor. But more than that He enabled me to be prepared enough so that I may become employed in a position that would help thousands of people with disabilities. Shortly after I graduated from graduate school I received a call from the unit manager of the vocational rehabilitation department in the city where I live. Without applying for the job I was interviewed and hired to work as a vocational rehabilitation counselor and I was placed in a regional rehabilitation center.
Throughout my career of almost 13 years I worked with many people with disabilities. Most of the people I worked with were not able to return to work so I helped them to become as independent as possible in their homes. Many of them I referred to other agencies, or transferred to other counselors in their counties of residence. By the time I left work, due to my own disability progressing, I was responsible for directly helping over 1000 people with disabilities become employed and independent. So, I did fulfill what I believe to be a part of God's major plan for me.
But as I said, my disability progressed and I was no longer able to work. Now that I was retired on disability I decided that I had time to devote towards determining what my own diagnosis was and is. So I spent the better part of the year devoted towards understanding my disability better, defining my disability, and researching my symptomology in medical libraries, both in physical libraries and online libraries. I finally began to develop a picture of what I believed to be my disability and my diagnosis. So I contacted my neurologist and explained my findings to him. I asked for two specific DNA tests to prove my findings. To this day I still don't know why he didn't order one of the test, but the one he did order, which I did not want, came back and showed that I was negative for CMT. After I discovered that he had not ordered the specific tests I requested, and with him not providing a reasonable explanation, I terminated our relationship and fired my neurologist. After finding a new neurologist, and explaining my findings, she was very interested and decided to order the DNA tests I had requested. Three months later the DNA test results came back, and were retested for confirmation. I had correctly diagnosed myself with Charcot-Marie-Tooth type 3, otherwise known as Dejerrine Sottas syndrome. There is no cure for what ails me, and the only treatment for me is minimal to moderate exercise.
Because of my genetic disorder I have never been able to walk. I've relied on a wheelchair most of my life, and finally started using a powered wheelchair in 1980, when I was 20 years old. I am now 52 years old and have been using a powered wheelchair for 32 years. I cannot bathe myself or dress myself, nor can I help myself with toileting. I am totally dependent upon the goodwill of others, especially my mother.
My mother is an Angel and has devoted her entire life to making sure that I have life and that my quality of life is good. She has sacrificed so much.
My disability has also resulted in asthma, partial paralysis of both of my eyes so that I cannot move them very well. I've also developed hearing loss and require the use of hearing aids in order to hear. The peripheral nerve that controls my stomach and how it empties has been impaired and I now have gastroparesis. In addition I suffer great pain from trigeminal neuralgia and sciatica. In September 2009 my bladder quit working properly and I've been forced to use an indwelling catheter. Soon I will have to undergo surgery in order to use a suprapubic catheter.
In any case, I'm asking each of you to help me. There are a number of items I need to help me keep strong and maintain my health and independence. My greatest concern is what do I need to do to make things easier for me and my mother, who is in her 70s. I cannot keep asking her to be my attendant as I am worried about its effect on her health and longevity. I worry about what's going to happen to me if something happens to my mother. So, rather than waiting I am trying to be proactive. I know the things I need to help me remain healthy and independent, but the cost is not covered by insurance and I cannot afford to do this by myself. I hate asking for help, but I do need help to cover this cost.
I need to help mom and I be independent, and remain independent as long as possible. To do this I will need to convert my van, because my mom is now in a powered wheelchair, and we cannot sit two powered wheelchairs in my van the way it is currently configured. Mom and I used to go everywhere together but we have not been able to do that for the past year, simply because we can't transport two wheelchairs at the same time. So I will need help in configuring my van so that two wheelchairs can be transported, but more than that I will need help to pay for it. I will be scheduling to take my van to a conversion facility, so that it may be evaluated to meet mom and my need. I was told that the actual conversion will be about $15,000, none of which is covered by insurance and none of which I can afford. So I need help for this.
Because I have CMT I have learned that my muscles, if properly stimulated and exercised, can remain somewhat healthy. In order to maintain my health, bone health, help maintain my flexibility, and help me with my bladder and bowel issues, I will need to exercise regularly. I can't do just any exercise, because I can further damage my neurological and muscular systems. So I have to be very careful and specific about the kinds of exercises I can do. As a result, my doctors and I have found the perfect exercise equipment for me to use. I had it on loan in my house for two months in order to test it. It worked very well for me and I was well pleased. This piece of equipment is called a MotoMed Viva 2, and is designed specifically to work with individuals like me and it addresses my disability needs. With this piece of equipment I am independent enough to help set myself up for exercises. I am told that this piece of equipment is almost $15,000. At this point I have been told that my insurance will not cover it.
I will need to find ways to make it easier for mom and I to continue living independently in our home. I need to make sure that everything is in place, especially if something happens to my mother. To do this we will need to convert part of my house by making the room larger and everything in it wheelchair accessible. I will also need to purchase the transfer systems so that I can get out of my bed and into my wheelchair with minimal assistance, or even by myself. I will also have it set up in the bathroom so that I may transfer to a shower chair in order to take showers. It will also be set up to transfer me from my wheelchair to the toilet and back, so that I may be independent in my toileting needs, or need only a minimal assistance in my toileting needs.
And finally, I will need help paying for attendant care services for myself. If I have attendant care services I would be able to stay in my home and I will not be forced to go into a nursing facility or nursing home. Once I'm up in my chair I am pretty independent, but I will need help with certain matters throughout the day. This is so central to my independence and remaining in my home. With attendant care services I will be able to take care of all my medical needs, my home will be taken care of, and I will be able to participate in normal social activities such as going to the grocery store, going to the movies, going to the restaurant to meet friends, etc. because right now I don't do any of that. I can't until I get help.
My life, my health, my desires, and my independence are all very important to me. So I want to thank you, in advance, for your consideration. The help you give me is greatly appreciated and can never be repaid. Thank you for considering me and my requests for assistance. May God bless you with a life filled with blessings, joy, happiness, and the love that surpasses all understanding. Once again, thank you for your time, for your patience, and for your help.
- Bobby Chappell
- Charles Chee
- Kimberly Truesdale
- Jessica Marie
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