Operation Relocation
Donation protected
Introduction:
Hello everyone, my name is Marissa and first I'd like to give you a big thank you and extend my gratitude to you for stopping by and taking the time to read this...it's not easy to admit when one needs help. I think most of us are similar in this regard, but there comes a time in life when you have to make a choice; to either stand still and watch your life pass you by or take a chance and reach out to achieve your goals...to create a better life. Well I've decided on the latter, to chase my dreams and goals and not let life pass on by. I face many obstacles that are putting up barriers to prevent me from reaching my future goals, but I refuse to let these obstructions stand in my way. Some are too large for me to tackle on my own and this is where I need your help. My goal in life is to study asteroids and defend our planet from future strikes that could wipe out a city or worse. In order to do this I need to relocate out to the southwest, my aim is for Arizona, where all the meteorite and astronomy action is located and I need your help to raise the funds for the moving process. I also need to raise the funds to purchase an accessible vehicle so that I am able to get to events, college, hunting locations, and important doctor appointments. So here I am..reaching out to my community and humbly asking for assistance on shaping my future. Please allow me to give you a bit of my back story so that you may better understand why this is so important to me and then I'll explain how you can help.
About Me:
I was born with a genetic condition called Spinal Muscular Atrophy, although prior to learning how to walk my parents had no idea what was lurking inside my body. At about eighteen months children should start to master gravity, to begin to stand and walk on their own two little feet. As my parents were trying to teach me how to walk they noticed that something was very wrong. They observed how I could not stay upright on my feet, as they describe it I looked like I was waddling and clearly I was struggling to walk. After numerous doctors, specialists, and tests one doctor came up with a possible answer....but the answer was one that my family hoped would be wrong. I was diagnosed with Spinal Muscular Atrophy type 2...sentencing me and my family to a life of pain, loss, endless procedures, doctors, equipment, hardships, and a very high chance of a short life.
For those of you who don't know, Spinal Muscular Atrophy is a muscular disease. All of our voluntary muscles, the muscles that we can control to move and do daily activities, receive a signal from our brains that travels down our spinal cord and to the muscle. Think of it as an electrical system. In our spinal cords we have these transmitters called motor neurons and they relay the signal to the appropriate muscle to stimulate that muscle, thus creating movement. With SMA the motor neurons were never able to send this signal down the spinal cord, they're missing a very important protein that keeps the motor neurons alive. The only reason people like me have any muscle function at all is because there is a backup signal that has the protein, but this was not meant to be a permanent solution and eventually this signal fades away. Over time all muscles that receive their signal via the spinal cord loose this important electric stimulus and they become weak until the stimulation is completely gone and you're unable to move that muscle. This includes toes, feet, legs, hips, fingers, hands; the arms, neck, chest, face, swallowing, and even the diaphragm. With the muscles unable to move properly they start to shrink and get tight causing atrophy. Think of it as a stretched rubber band that can't relax, it's a painful process. I will not sugar coat anything here...this is a fatal condition. One of the most important muscles is the diaphragm and the disease will eventually take this muscle away as well. Yes there are breathing machines but these machines only hold off the inevitable a little while longer. With no diaphragm muscles you are no longer able to cough and breathing machines do not assist you with coughing. Mortality occurs because you fall ill and are unable to clear your lungs, causing pneumonia. So that's it....that's my condition in a nutshell.
When I was diagnosed they gave my family a very bleak outlook, my parents were told that I would not live past the age of thirteen....and here I am, in my twenties and trying to live the best life I can possibly live. The journey here was not an easy one. I became very very sick at a young age. I can only remember bits and pieces but I remember them well because I had a tube in my mouth to assist me with my breathing and that was very painful. I could not move, talk, or eat. With a condition as severe as mine everyone was expecting me to die, I remember a priest coming in and praying over me. By some miracle I recovered and I was allowed to go home...but that was just the beginning of this monster trying to destroy my body and life. At four or five years old my parents sat me down to reveal everything they knew about my condition and what would happen to me as simple and gentle as they could. How is a child supposed to process their own mortality? Well I broke down....I did not see a point to life. I didn't want to make new friends, get into any activities or hobbies, or even find out who I am. I didn't want to do anything to create a life of my own; I didn't see a point when my disease will just take it all away from me. From that point on I knew that my life would be filled with more hardships than most other people. I've had numerous surgeries performed on my body that include numerous tendon releases on my legs to hold off the atrophy process, spinal fusion to stop my spine from curving any further, a diaphragm pace maker to save me from traditional breathing machines and I've had a feeding tube put in place. Besides the pace maker I had no choice but to do these procedures...not doing so would have meant death, and more will come. On top of my medical condition I have been rejected and bullied by society, by children and adults. All of this caused me to become a very shy, quiet, scared, cautious loner who only wanted to be left alone to leave peacefully. That is....until I fell in love. I finally found my passions, a purpose for my life and a reason why I am still alive.
Why This is Important:
In 2010 after I graduated from high school I had no plans for my future, I was letting go and just giving up thinking I've reached the end of my life. Then on the week of my birthday I was outside at a friend's house enjoying a bonfire when I decided to lean back and relax. The sky overhead was perfectly clearly with stars dotted everywhere and suddenly I saw a shooting star pass by. Intrigued I kept watching, hoping to see more grace the sky and to my shock and surprise meteors kept pooping up everywhere; I had witnessed my very first meteor shower. I was mystified and trapped in a trance, unable to look away. After that I started looking into astronomy and I learned of a total lunar eclipse set to occur later that year in December. What I saw when I witnessed that event changed my life forever....I saw beauty beyond anything I've ever seen before. For the first time in my life I felt peace, serenity, magic, awareness, connection, and I felt alive. I was so lost in the moment that I didn't even feel the cold December night anymore. At that moment I discovered a part of myself and I decided to do whatever it took to learn about our incredible universe, to see as much of it as possible before my disease would make that impossible. In 2011 I joined an astronomy club and not long after that I found the branch of astronomy that captured me the most; meteorites, rocks from space. Since then I've met the most incredible people in my life, learned through them, started a meteorite collection, attended college to pursue a career in astronomy, and even traveled out west to become the first ever physically disabled meteorite hunter and finder. Everything seemed to be falling into place, but then some hardships caused my life to come to an abrupt halt.
My previous care company was shut down and this occurred while I was at college. When this happens normally you are forced to move to a new place where a care company can assist in your daily needs and usually you have no choice in who already lives there. I had no idea if my belongings were already being moved, where the system was going to put me, new people would have to learn my routine so my comfort was gone, how I would get home because my company provided my transportation, and how I would get back to campus. Well thankfully a new company came into my home but not long after this mess my little sister became very sick with her liver failing. Nobody in my family couldn't give part of their liver and she was very sick with an unknown condition so I thought that she may not be put on a donor list. Besides my muscle disease I'm healthy; my thought immediately went to giving her my liver. So....I was mentally preparing myself to sacrifice myself to save her. With all of that raining down at once I dropped out of college, now I cannot return until I pay the school what I owe them for withdrawing from my classes.
When I traveled out west I completely fell in love with everything. The future I envision for myself is to do more meteorite hunting, to be involved in astronomy and meteorites, meet scientists, get back to college, and have a career in studying asteroids and defend our planet from future impacts. This is where I need your help...
My first goal in reaching my dreams for the future are to relocate out west and secure an accessible van to get to events, go on meteorite hunts, get to my college classes, and all of my doctor appointments. I currently reside in Ohio and for astronomy and meteorites Ohio is not a very active state to live in. Most meteorites are found in dry desert environments, the lack of moisture preserves these space travelers for longer periods of time. The lack of rain also offers many more clear skies for astronomy observations and research; out west is where all the action is and that is where I need to go.
Unfortunately in order to do this one needs the funds for the whole relocation process and in my special case there are extra expenses involved in a huge undertaking such as this. With all the normal costs of a moving truck, food, security deposit and first months rent I also have to travel by plane as traveling across the country by a car would be too difficult on my body. If I am very fortunate enough to raise the funds for a van I would be purchasing the vehicle once I'm in Arizona. On top of all of that I cannot travel alone, two people must go with me to assist me with the traveling process and with any care that I need. The funds raised will go towards securing a place to live, a moving truck, plane tickets for my travel assistants and myself, my travel assistants flight back, food, and transportation to and from the airport. My health insurance will cover some of the hours that aids can receive in providing care but they won't pay any care service for 24 hours. The health insurance company will not cover their airfare or return trip or food expenses. As a disabled individual I am not capable of working in a typical dad to day job, I need a career that is suitable for my circumstances and capabilities. My only source of income is SSI and my rent takes up almost all of my monthly check, after other needed expenses and bills I have nothing left. An accessible van, even used, is a very expensive item. The entire floor of the van needs lowered so that a wheelchair and the individual can fit. Then the ramp must be installed which is another expensive process. These vehicles go from $20,000 and up, if you want to secure a safe and reliable car that will last you ten or more years. So this is my dilemma....this is where I am stuck. I humbly reach out to my community for assistance and ask that you please help me in reaching my goal so that I may begin my future. I want to ensure that our future generations have a place to call home, more knowledge and understanding of the universe, and to begin the process of space exploration. This is how I want to give back to my community, but I cannot get there without your help. Thank you for your time. Help me spread the word by sharing this on Facebook or Twitter!
Hello everyone, my name is Marissa and first I'd like to give you a big thank you and extend my gratitude to you for stopping by and taking the time to read this...it's not easy to admit when one needs help. I think most of us are similar in this regard, but there comes a time in life when you have to make a choice; to either stand still and watch your life pass you by or take a chance and reach out to achieve your goals...to create a better life. Well I've decided on the latter, to chase my dreams and goals and not let life pass on by. I face many obstacles that are putting up barriers to prevent me from reaching my future goals, but I refuse to let these obstructions stand in my way. Some are too large for me to tackle on my own and this is where I need your help. My goal in life is to study asteroids and defend our planet from future strikes that could wipe out a city or worse. In order to do this I need to relocate out to the southwest, my aim is for Arizona, where all the meteorite and astronomy action is located and I need your help to raise the funds for the moving process. I also need to raise the funds to purchase an accessible vehicle so that I am able to get to events, college, hunting locations, and important doctor appointments. So here I am..reaching out to my community and humbly asking for assistance on shaping my future. Please allow me to give you a bit of my back story so that you may better understand why this is so important to me and then I'll explain how you can help.
About Me:
I was born with a genetic condition called Spinal Muscular Atrophy, although prior to learning how to walk my parents had no idea what was lurking inside my body. At about eighteen months children should start to master gravity, to begin to stand and walk on their own two little feet. As my parents were trying to teach me how to walk they noticed that something was very wrong. They observed how I could not stay upright on my feet, as they describe it I looked like I was waddling and clearly I was struggling to walk. After numerous doctors, specialists, and tests one doctor came up with a possible answer....but the answer was one that my family hoped would be wrong. I was diagnosed with Spinal Muscular Atrophy type 2...sentencing me and my family to a life of pain, loss, endless procedures, doctors, equipment, hardships, and a very high chance of a short life.
For those of you who don't know, Spinal Muscular Atrophy is a muscular disease. All of our voluntary muscles, the muscles that we can control to move and do daily activities, receive a signal from our brains that travels down our spinal cord and to the muscle. Think of it as an electrical system. In our spinal cords we have these transmitters called motor neurons and they relay the signal to the appropriate muscle to stimulate that muscle, thus creating movement. With SMA the motor neurons were never able to send this signal down the spinal cord, they're missing a very important protein that keeps the motor neurons alive. The only reason people like me have any muscle function at all is because there is a backup signal that has the protein, but this was not meant to be a permanent solution and eventually this signal fades away. Over time all muscles that receive their signal via the spinal cord loose this important electric stimulus and they become weak until the stimulation is completely gone and you're unable to move that muscle. This includes toes, feet, legs, hips, fingers, hands; the arms, neck, chest, face, swallowing, and even the diaphragm. With the muscles unable to move properly they start to shrink and get tight causing atrophy. Think of it as a stretched rubber band that can't relax, it's a painful process. I will not sugar coat anything here...this is a fatal condition. One of the most important muscles is the diaphragm and the disease will eventually take this muscle away as well. Yes there are breathing machines but these machines only hold off the inevitable a little while longer. With no diaphragm muscles you are no longer able to cough and breathing machines do not assist you with coughing. Mortality occurs because you fall ill and are unable to clear your lungs, causing pneumonia. So that's it....that's my condition in a nutshell.
When I was diagnosed they gave my family a very bleak outlook, my parents were told that I would not live past the age of thirteen....and here I am, in my twenties and trying to live the best life I can possibly live. The journey here was not an easy one. I became very very sick at a young age. I can only remember bits and pieces but I remember them well because I had a tube in my mouth to assist me with my breathing and that was very painful. I could not move, talk, or eat. With a condition as severe as mine everyone was expecting me to die, I remember a priest coming in and praying over me. By some miracle I recovered and I was allowed to go home...but that was just the beginning of this monster trying to destroy my body and life. At four or five years old my parents sat me down to reveal everything they knew about my condition and what would happen to me as simple and gentle as they could. How is a child supposed to process their own mortality? Well I broke down....I did not see a point to life. I didn't want to make new friends, get into any activities or hobbies, or even find out who I am. I didn't want to do anything to create a life of my own; I didn't see a point when my disease will just take it all away from me. From that point on I knew that my life would be filled with more hardships than most other people. I've had numerous surgeries performed on my body that include numerous tendon releases on my legs to hold off the atrophy process, spinal fusion to stop my spine from curving any further, a diaphragm pace maker to save me from traditional breathing machines and I've had a feeding tube put in place. Besides the pace maker I had no choice but to do these procedures...not doing so would have meant death, and more will come. On top of my medical condition I have been rejected and bullied by society, by children and adults. All of this caused me to become a very shy, quiet, scared, cautious loner who only wanted to be left alone to leave peacefully. That is....until I fell in love. I finally found my passions, a purpose for my life and a reason why I am still alive.
Why This is Important:
In 2010 after I graduated from high school I had no plans for my future, I was letting go and just giving up thinking I've reached the end of my life. Then on the week of my birthday I was outside at a friend's house enjoying a bonfire when I decided to lean back and relax. The sky overhead was perfectly clearly with stars dotted everywhere and suddenly I saw a shooting star pass by. Intrigued I kept watching, hoping to see more grace the sky and to my shock and surprise meteors kept pooping up everywhere; I had witnessed my very first meteor shower. I was mystified and trapped in a trance, unable to look away. After that I started looking into astronomy and I learned of a total lunar eclipse set to occur later that year in December. What I saw when I witnessed that event changed my life forever....I saw beauty beyond anything I've ever seen before. For the first time in my life I felt peace, serenity, magic, awareness, connection, and I felt alive. I was so lost in the moment that I didn't even feel the cold December night anymore. At that moment I discovered a part of myself and I decided to do whatever it took to learn about our incredible universe, to see as much of it as possible before my disease would make that impossible. In 2011 I joined an astronomy club and not long after that I found the branch of astronomy that captured me the most; meteorites, rocks from space. Since then I've met the most incredible people in my life, learned through them, started a meteorite collection, attended college to pursue a career in astronomy, and even traveled out west to become the first ever physically disabled meteorite hunter and finder. Everything seemed to be falling into place, but then some hardships caused my life to come to an abrupt halt.
My previous care company was shut down and this occurred while I was at college. When this happens normally you are forced to move to a new place where a care company can assist in your daily needs and usually you have no choice in who already lives there. I had no idea if my belongings were already being moved, where the system was going to put me, new people would have to learn my routine so my comfort was gone, how I would get home because my company provided my transportation, and how I would get back to campus. Well thankfully a new company came into my home but not long after this mess my little sister became very sick with her liver failing. Nobody in my family couldn't give part of their liver and she was very sick with an unknown condition so I thought that she may not be put on a donor list. Besides my muscle disease I'm healthy; my thought immediately went to giving her my liver. So....I was mentally preparing myself to sacrifice myself to save her. With all of that raining down at once I dropped out of college, now I cannot return until I pay the school what I owe them for withdrawing from my classes.
When I traveled out west I completely fell in love with everything. The future I envision for myself is to do more meteorite hunting, to be involved in astronomy and meteorites, meet scientists, get back to college, and have a career in studying asteroids and defend our planet from future impacts. This is where I need your help...
My first goal in reaching my dreams for the future are to relocate out west and secure an accessible van to get to events, go on meteorite hunts, get to my college classes, and all of my doctor appointments. I currently reside in Ohio and for astronomy and meteorites Ohio is not a very active state to live in. Most meteorites are found in dry desert environments, the lack of moisture preserves these space travelers for longer periods of time. The lack of rain also offers many more clear skies for astronomy observations and research; out west is where all the action is and that is where I need to go.
Unfortunately in order to do this one needs the funds for the whole relocation process and in my special case there are extra expenses involved in a huge undertaking such as this. With all the normal costs of a moving truck, food, security deposit and first months rent I also have to travel by plane as traveling across the country by a car would be too difficult on my body. If I am very fortunate enough to raise the funds for a van I would be purchasing the vehicle once I'm in Arizona. On top of all of that I cannot travel alone, two people must go with me to assist me with the traveling process and with any care that I need. The funds raised will go towards securing a place to live, a moving truck, plane tickets for my travel assistants and myself, my travel assistants flight back, food, and transportation to and from the airport. My health insurance will cover some of the hours that aids can receive in providing care but they won't pay any care service for 24 hours. The health insurance company will not cover their airfare or return trip or food expenses. As a disabled individual I am not capable of working in a typical dad to day job, I need a career that is suitable for my circumstances and capabilities. My only source of income is SSI and my rent takes up almost all of my monthly check, after other needed expenses and bills I have nothing left. An accessible van, even used, is a very expensive item. The entire floor of the van needs lowered so that a wheelchair and the individual can fit. Then the ramp must be installed which is another expensive process. These vehicles go from $20,000 and up, if you want to secure a safe and reliable car that will last you ten or more years. So this is my dilemma....this is where I am stuck. I humbly reach out to my community for assistance and ask that you please help me in reaching my goal so that I may begin my future. I want to ensure that our future generations have a place to call home, more knowledge and understanding of the universe, and to begin the process of space exploration. This is how I want to give back to my community, but I cannot get there without your help. Thank you for your time. Help me spread the word by sharing this on Facebook or Twitter!
Organizer
Marissa Fanady
Organizer
Tallmadge, OH