Help Shannon Fight MS
Donation protected
This might be one of the hardest things I’ll ever write in my life, but it is time.
I am of officially out of work, out of pay and about ready to lose my medical just days before my $121,000 treatment on the mainland.
Diagnosed with Primary Progressive Multiple Sclerosis (PPMS), I have gone from running around with my daughter to being confined to a wheelchair in just three rough years; most people with PPMS progress to this stage in about 15-20 years. I am a 39 year old teacher, scholar, mother and wife. My age, type and the aggressiveness of this diagnosis have doctors puzzled. With just 1 working limb left, my family and I are struggling to adjust to this new life. This new life that has robbed us all of the Shannon we once knew. Losing a few battles, here and there, as a scientist and science teacher I am convinced that I can beat this war with your help.
My story
My name is Shannon De Luz, born and raised on the Big Island of Hawaii.
I come from a 3rd-generation cattle-ranching family, and I grew up working on the ranch at a very young age. We are a generation that didn’t talk back and pulled more than our own weight in the house and out on the land.
My little brother, Shane, and I grew up milking our own cows in the old red barn on the slopes of Mauna Kea.
We worked hard on the growing ranch, moving cows from pasture to pasture on horseback, wrestling cattle, splitting wood, digging fence holes, fixing water lines, lining ponds, driving trucks and tractors and going to rodeos when we could. We were hard working Ranch Hands doing what we knew to keep the ranch growing to its 30,000 acres at one point in my college years.
We ran around everywhere on foot, from our ranch on the top of Mauna Kea down to our home in Pa’auilo. There was nothing that could stop us. We were known as Shannon and Shane the two terras- (Pidgin for dynamic duo); lively, self- motivated, energetic, vibrant and vigorous partners in play and work. We knew of no such thing as cell phones, cameras, or remote control cars —just hard work and caring for the many animals at home, including the occasional orphan calf we’d find in the mountains that needed to be nursed back to health. Of course we’d play football and ride bicycles whenever we had a chance to play with the neighbors. We made slides out of cardboard and horse tails out of ti leaves and wouldn’t come home until the sun went down, when dad’s whistle signaling us to get into the house was heard in the dark.
We didn’t play sports or have after-school activities, we worked with our dad and grandpa. It was straight to school and straight back. There was no stopping along the way to buy gum or candy like the rest. There were things to be done and they knew that with too much time on our hands we’d get in trouble. Besides, they needed our help. We worked harder than most men, as I remember bystanders saying.
I was the tough cowgirl that went pig hunting with my brother and his friends, bragging and bickering about whose dog was better than whose and whose pig was bigger than whose.
All through college I continued to help on the ranch. My boyfriend (now my husband) didn’t understand it, but I did it. It wasn’t something you weren’t asked to do, it was something you just did. It wasn’t something you could explain, it was something that explained you and it was something that you didn’t choose, it chose you.
Today, this fairytale of a story has all changed.
2014: THE SILENT THIEF
Today, this has all changed. This is no longer me. This life that people only dream of, was taken from me one summer, on June 4, 2014, when I few on an airplane for work. After getting off the plane for a teacher conference, my left leg suddenly stopped working. For reasons that I cannot explain, I could barely walk on a paved sidewalk. I was dragging my leg as if it were dead. Colleagues stared at me with bewilderment, wondering what was wrong and what had happened. All I could say was, “I rode a plane”. I didn’t get bucked off a horse this time, or slammed on the ground by some 650 pound animal again but I rode a plane. I had no explanation. All that I could think of was maybe some pinch nerve from my cowgirl back. I’d remembered Dr. Groom explaining to me at age 14 that I had a back of a 40 year old construction worker- having bad disk in L3, L4, L5, S1 and S2 vertebrae that would slip and lean on the sciatic nerve every now and again. I told the teachers to go ahead, I will catch up, just let the people know that I’ll be late.
Now, I am the type of patient that only shows up to the doctors' steps if I am to quote Dr. Groom, "dying". I would only come in if I had pneumonia or needed to stitch my eye from a horse kick or some other injury on the ranch. But I knew this was different. I made an appointment immediately upon returning home from Honolulu. I knew this had something to do with nerves. I’ve seen animals behave this way after being extremely hot and stressed, and for the most part, they do not live to see the next day. But I had a three-year-old baby at home that I needed to raise (my ONE AND ONLY, born at 26 weeks, weighing less than 2 pounds). Looking back, the stress of my daughter's birth, the round-the-clock pumping of breast milk, and the stress of being a middle school science teacher may have triggered it. My husband became diabetic by the time I brought our baby home from the hospital. And I believe that my grandmother's slow passing finished it when I stepped up to keep the ranch afloat, this time as a bookkeeper. All my life, I was told the ranch was small, but I learned very quickly how immense it really was.
2015: THE TURNING POINT
It would take a year since that flight to come to a proper diagnosis. I knew from day one that this had something to do with nerves and that I needed an MRI badly. I had to appease the medical and insurance communities and play their game of protocol before they’d even consider taking a photograph of my nervous system. Office visit after office visit, blood test after blood test, more office visits, physical therapy, all of which led to substantial, irreversible and debilitating consequences on my part. It was evident that time was not on my side. I was getting bad and I was getting bad fast! I was losing my ability to do everything!
It was not until summer of 2015 that I hit my last straw. I was playing with daughter, now 4 in our front yard one day when she ran to the head of a car to catch a runaway ball. That was the day I discovered I could not run. Being born just over a pound and the trauma that comes with such an experience I lay on my stomach, yelling STOP!, watching my daughter cross a blind street chasing a runaway ball heading to the front of a fast approaching car.
This was the turning point of everything. I had been living with this mysterious ailment, this thief robbing me of my legs, for a year now, and getting progressively worse. After watching my daughter’s near-death encounter as I lay helplessly paralyzed on the grass, I knew that I had to take my health into my own hands. I marched into the doctor’s office and told them that this was not a game anymore. I told them that I said it a year ago and I am saying it again, this is neurological and I need a MRI even if I had to pay for it out -of-pocket! I told them that I had laid on my stomach, helpless and unable to move my legs, paralyzed as I watched my daughter nearly die before my eyes.
Shortly after that demand, I was referred to a "specialist", a neurologist 4 months later. Unfortunately, there was a 3 to 4 month waiting period for new patients, and I continued to get worse during this time. Once I arrived for that visit, I learned the doctor had orders to treat my bladder for incontinence. I firmly and politely grabbed the doctors hand and said, “I did not drive across the island just to go to physical therapy for a year and helplessly watch my daughters near-death experience, and then wait 4 long months to see you just to talk about my bladder, I can wear a diaper for all I care! Something way worse is happening to me and I NEED an MRI. I demand an MRI."
Long story short, I got an MRI.
2016: THE MRI AND THE 7-MINUTE VISIT
I was called back to the neurologist's office, and this time it was quick! The appointment was at 8:00, and I was out at 8:07. It was at this visit that I was told I had MS. I was happy! I had finally gotten an MRI and had a label. I had no idea what MS was other than the doctor called it, “MS, also known as multiple sclerosis.” He said that there was no cure and that he could give me medicine to slow it down. He asked me what medicine I wanted, and I replied, "Whichever you think would be best." I got back to my truck and looked up MS. What I read devastated me! I read all kinds of things, like getting progressively worse, being in a wheelchair, bedridden, trouble swallowing, peeing and pooping your pants, blindness, paralysis from the neck down, etc. I thought to myself, this can’t be so. I am a cowgirl for crying out loud. I am not this weak or this ill. I have a bad back and some nerve is pinched. I immediately went into denial. How could such a painful lifelong diagnosis be discussed in 7 short minutes. This cannot be true. It can’t be this serious.
Well it was, and it is. This thief that I refer to is exactly that. My immune system is eating away at my brain and spine as I write. In my case, it's mostly eating my spine, which will make me paralyzed quickly if I don’t do something fast!
I declined rapidly in that 4 months and saw a new neurologist. This time I knew what MS was. The thief, now more properly termed, "the monster," was showing its strength and I was ready to try anything. He put me on my first med, Tecfidera, which almost killed me and landed me in the emergency room. Tecfidera was switched to Plegridy, which is the medicine I inject myself with still today. Being on Plegridy is like having the flu for 3 weeks of each month. Your teeth, eyes, hair, bones, muscles—everything—aches, and you can barely move an inch.
None of these medicines seemed to work and the progression of the disease continued. This time the monster was showing its true strength.
2017: TAKING MATTERS INTO MY OWN HANDS
In 2017, after losing my balance and sight, feeling pins and needles in my legs, loosing sensation in my hands, and peeing my pants all the time, I turned to my own research. I had become my own doctor at this point and began following clinical trials of different types of treatments both in and outside of the USA. I knew more than my caregivers at this point as they were giving up on me- you see, there is not a pill on this planet that they could sell me to cure this. And so, I had come to the realization that every person is the author of his or her own health.
2018: I TOOK TO THE MAINLAND
After years of no improvement or somewhat slowing down the progression, with just one working limb left, my family and I looked to the mainland for another opinion. In May of 2018, I took it upon myself to go to Seattle, Washington in hopes of finding some help. It was at that time that I was informed by doctors that I did not just have the usual Relapsing-Remitting Multiple Sclerosis (RRMS), but rather I had a RARE and AGGRESSIVE form of MS known as Primary-Progressive Multiple Sclerosis (PPMS) and even within the PPMS realm I was the rarest of them all progressing this quickly in just three years. None of the treatments or medications I endured so far was doing me any good.
Since then, I have had to travel back and forth to Seattle for treatments that is not available in Hawaii or covered by insurance. The traveling has put a strain on us financially as I need my husband and daughter to accompany me since it would be impossible for me to make the trip alone. This past July, we had to spend two weeks in Washington to start my newly released treatment through infusion. Those trips cost us over $17,000. I am officially out of work due to my current level of disability and inadequate access to my classroom where I teach middle and high school science. Even worse, I'm about to lose my insurance, just days before my $121,000 treatment on the mainland. I need this treatment to halt the progression of my disease in hopes of being able to watch my daughter grow, ride in the rodeo, and learn about the cowgirl life that I once lived. Today unable to mobilize freely, I sit hoisted in the trailer and watch her rodeos on my phone from the videos people send me.
WHAT I NEED FROM YOU TO GET BACK IN THE SADDLE
I am hoping to purchase an Action Trackchair (as seen in the picture above) and here in this link http://actiontrackchair.com/ so that I can travel on the ranch and rodeo terrain watching my daughter perform in person and surround myself with people again, more importantly my family.
The video below shows how the Action Tracker gave a cowboy back his life after losing his legs and how it helped a bride "walk" down the isle and stand up before her groom.

Trackchair wheelchair videos, http://actiontrackchair.com/videos/
Since it is getting harder for me to get in and out of my car, I sit and watch my family do everything from afar. I need to have it modified so that I can get a wheelchair in and out of it independently. This modification would allow me to go to the doctor BY MYSELF, get a bite to eat at a restaurant of choice BY MYSELF, pick up my daughter BY MYSELF. I would be able to go grocery shopping BY MYSELF. My vehicle is my only freedom. Right now my car IS my legs. Without it I’m convinced I would be in a nursing home unable to care for myself independently.
All these things cost money. The motorized wheelchair costs $28,000; to modify my car starts at $30,000; a bed that I can get on and off of is $10,000; as well as making our home safe and handicap accessible so I can remain home alone safely, and help prepare meals to be the mom and wife I am.
Car Modification video, https://www.youtube.com/watch?v=f2cx83xL3QU

To help me regain independence, function, and mobility, and to stay out of a wheelchair I need a Bioness system for my legs that costs $23,200 so that I walk again. Right now I use a brace that is cutting off circulation in my legs, shrinking my calf muscle and preventing me from standing. I also need, $5,580 for a Bioness system to make my hand work again. I would give anything to be able to get in and out of the shower by myself and to be able to brush my own hair or simply carry my own cup of water.
Here is a video of the Bioness system for my leg. Because I have footdrop I am unable to lift my toes/foot while walking. This device will fix that by shocking my nerves with each step lifting my foot clearing the ground so that I can walk again! Here, what it looks like, https://www.youtube.com/watch?v=82iErxLZS_k
This next procedure is my last attempt to stop the progression of this disease before heading to Clínica Ruiz in Mexico for an HSTC procedure that is potentially dangerous for a person with my type of MS and my condition. Many have died from sepsis following this procedure due to having zero immune system from the harsh chemo use to wipeout the system, as they are unable to fight their own gut bacteria.
Given that this is one of my last hopes of slowing the progression of my aggressive PPMS here in the US, there is no question for me that it’s worth the time, energy, financial burden and personal exposure. As I said in the beginning, this GoFundMe plea is the hardest thing I will ever do and write, as I peel away all the tough layers my family and I have put up, shielding others of the suffering that really goes on behind closed doors.
I am 39 years old. I have only had a chance to have one child, when we hoped for many more. Yes, I have a commode two feet away from my bed so that I can use the restroom because I cannot walk in my home once these painful braces come off. Yes, my husband has to give me a bath and wash and brush my hair. And yes, my 8-year-old daughter is like a service dog, running all over the place helping me and her dad fetch things as he attends to me. She is also my very own nurse, and she has seen and done things for me no child her age should ever have to do or experience. Yes, I can’t carry a cup of coffee or a glass of water and walk at the same time. YES, I CAN’T DO THESE THINGS AT THE MOMENT, BUT I CAN AND I WILL WITH YOUR HELP! I am not dead yet. With the right treatment, tools and accommodations, I WILL DO THESE THINGS AGAIN! I PROMISE.
As I said early on in this paper, every person is the author of his or her own health. So, what do you say? Help me write the next chapter, this time with a happy ending..
Mahalo Nui and Aloha for taking the time in reading this personal plea.
*Photos, Videos and Updates to come.
All the Best,
Shannon

I am of officially out of work, out of pay and about ready to lose my medical just days before my $121,000 treatment on the mainland.
Diagnosed with Primary Progressive Multiple Sclerosis (PPMS), I have gone from running around with my daughter to being confined to a wheelchair in just three rough years; most people with PPMS progress to this stage in about 15-20 years. I am a 39 year old teacher, scholar, mother and wife. My age, type and the aggressiveness of this diagnosis have doctors puzzled. With just 1 working limb left, my family and I are struggling to adjust to this new life. This new life that has robbed us all of the Shannon we once knew. Losing a few battles, here and there, as a scientist and science teacher I am convinced that I can beat this war with your help.
My story
My name is Shannon De Luz, born and raised on the Big Island of Hawaii.
I come from a 3rd-generation cattle-ranching family, and I grew up working on the ranch at a very young age. We are a generation that didn’t talk back and pulled more than our own weight in the house and out on the land.
My little brother, Shane, and I grew up milking our own cows in the old red barn on the slopes of Mauna Kea.
We worked hard on the growing ranch, moving cows from pasture to pasture on horseback, wrestling cattle, splitting wood, digging fence holes, fixing water lines, lining ponds, driving trucks and tractors and going to rodeos when we could. We were hard working Ranch Hands doing what we knew to keep the ranch growing to its 30,000 acres at one point in my college years.
We ran around everywhere on foot, from our ranch on the top of Mauna Kea down to our home in Pa’auilo. There was nothing that could stop us. We were known as Shannon and Shane the two terras- (Pidgin for dynamic duo); lively, self- motivated, energetic, vibrant and vigorous partners in play and work. We knew of no such thing as cell phones, cameras, or remote control cars —just hard work and caring for the many animals at home, including the occasional orphan calf we’d find in the mountains that needed to be nursed back to health. Of course we’d play football and ride bicycles whenever we had a chance to play with the neighbors. We made slides out of cardboard and horse tails out of ti leaves and wouldn’t come home until the sun went down, when dad’s whistle signaling us to get into the house was heard in the dark.
We didn’t play sports or have after-school activities, we worked with our dad and grandpa. It was straight to school and straight back. There was no stopping along the way to buy gum or candy like the rest. There were things to be done and they knew that with too much time on our hands we’d get in trouble. Besides, they needed our help. We worked harder than most men, as I remember bystanders saying.
I was the tough cowgirl that went pig hunting with my brother and his friends, bragging and bickering about whose dog was better than whose and whose pig was bigger than whose.
All through college I continued to help on the ranch. My boyfriend (now my husband) didn’t understand it, but I did it. It wasn’t something you weren’t asked to do, it was something you just did. It wasn’t something you could explain, it was something that explained you and it was something that you didn’t choose, it chose you.
Today, this fairytale of a story has all changed.
2014: THE SILENT THIEF
Today, this has all changed. This is no longer me. This life that people only dream of, was taken from me one summer, on June 4, 2014, when I few on an airplane for work. After getting off the plane for a teacher conference, my left leg suddenly stopped working. For reasons that I cannot explain, I could barely walk on a paved sidewalk. I was dragging my leg as if it were dead. Colleagues stared at me with bewilderment, wondering what was wrong and what had happened. All I could say was, “I rode a plane”. I didn’t get bucked off a horse this time, or slammed on the ground by some 650 pound animal again but I rode a plane. I had no explanation. All that I could think of was maybe some pinch nerve from my cowgirl back. I’d remembered Dr. Groom explaining to me at age 14 that I had a back of a 40 year old construction worker- having bad disk in L3, L4, L5, S1 and S2 vertebrae that would slip and lean on the sciatic nerve every now and again. I told the teachers to go ahead, I will catch up, just let the people know that I’ll be late.
Now, I am the type of patient that only shows up to the doctors' steps if I am to quote Dr. Groom, "dying". I would only come in if I had pneumonia or needed to stitch my eye from a horse kick or some other injury on the ranch. But I knew this was different. I made an appointment immediately upon returning home from Honolulu. I knew this had something to do with nerves. I’ve seen animals behave this way after being extremely hot and stressed, and for the most part, they do not live to see the next day. But I had a three-year-old baby at home that I needed to raise (my ONE AND ONLY, born at 26 weeks, weighing less than 2 pounds). Looking back, the stress of my daughter's birth, the round-the-clock pumping of breast milk, and the stress of being a middle school science teacher may have triggered it. My husband became diabetic by the time I brought our baby home from the hospital. And I believe that my grandmother's slow passing finished it when I stepped up to keep the ranch afloat, this time as a bookkeeper. All my life, I was told the ranch was small, but I learned very quickly how immense it really was.
2015: THE TURNING POINT
It would take a year since that flight to come to a proper diagnosis. I knew from day one that this had something to do with nerves and that I needed an MRI badly. I had to appease the medical and insurance communities and play their game of protocol before they’d even consider taking a photograph of my nervous system. Office visit after office visit, blood test after blood test, more office visits, physical therapy, all of which led to substantial, irreversible and debilitating consequences on my part. It was evident that time was not on my side. I was getting bad and I was getting bad fast! I was losing my ability to do everything!
It was not until summer of 2015 that I hit my last straw. I was playing with daughter, now 4 in our front yard one day when she ran to the head of a car to catch a runaway ball. That was the day I discovered I could not run. Being born just over a pound and the trauma that comes with such an experience I lay on my stomach, yelling STOP!, watching my daughter cross a blind street chasing a runaway ball heading to the front of a fast approaching car.
This was the turning point of everything. I had been living with this mysterious ailment, this thief robbing me of my legs, for a year now, and getting progressively worse. After watching my daughter’s near-death encounter as I lay helplessly paralyzed on the grass, I knew that I had to take my health into my own hands. I marched into the doctor’s office and told them that this was not a game anymore. I told them that I said it a year ago and I am saying it again, this is neurological and I need a MRI even if I had to pay for it out -of-pocket! I told them that I had laid on my stomach, helpless and unable to move my legs, paralyzed as I watched my daughter nearly die before my eyes.
Shortly after that demand, I was referred to a "specialist", a neurologist 4 months later. Unfortunately, there was a 3 to 4 month waiting period for new patients, and I continued to get worse during this time. Once I arrived for that visit, I learned the doctor had orders to treat my bladder for incontinence. I firmly and politely grabbed the doctors hand and said, “I did not drive across the island just to go to physical therapy for a year and helplessly watch my daughters near-death experience, and then wait 4 long months to see you just to talk about my bladder, I can wear a diaper for all I care! Something way worse is happening to me and I NEED an MRI. I demand an MRI."
Long story short, I got an MRI.
2016: THE MRI AND THE 7-MINUTE VISIT
I was called back to the neurologist's office, and this time it was quick! The appointment was at 8:00, and I was out at 8:07. It was at this visit that I was told I had MS. I was happy! I had finally gotten an MRI and had a label. I had no idea what MS was other than the doctor called it, “MS, also known as multiple sclerosis.” He said that there was no cure and that he could give me medicine to slow it down. He asked me what medicine I wanted, and I replied, "Whichever you think would be best." I got back to my truck and looked up MS. What I read devastated me! I read all kinds of things, like getting progressively worse, being in a wheelchair, bedridden, trouble swallowing, peeing and pooping your pants, blindness, paralysis from the neck down, etc. I thought to myself, this can’t be so. I am a cowgirl for crying out loud. I am not this weak or this ill. I have a bad back and some nerve is pinched. I immediately went into denial. How could such a painful lifelong diagnosis be discussed in 7 short minutes. This cannot be true. It can’t be this serious.
Well it was, and it is. This thief that I refer to is exactly that. My immune system is eating away at my brain and spine as I write. In my case, it's mostly eating my spine, which will make me paralyzed quickly if I don’t do something fast!
I declined rapidly in that 4 months and saw a new neurologist. This time I knew what MS was. The thief, now more properly termed, "the monster," was showing its strength and I was ready to try anything. He put me on my first med, Tecfidera, which almost killed me and landed me in the emergency room. Tecfidera was switched to Plegridy, which is the medicine I inject myself with still today. Being on Plegridy is like having the flu for 3 weeks of each month. Your teeth, eyes, hair, bones, muscles—everything—aches, and you can barely move an inch.
None of these medicines seemed to work and the progression of the disease continued. This time the monster was showing its true strength.
2017: TAKING MATTERS INTO MY OWN HANDS
In 2017, after losing my balance and sight, feeling pins and needles in my legs, loosing sensation in my hands, and peeing my pants all the time, I turned to my own research. I had become my own doctor at this point and began following clinical trials of different types of treatments both in and outside of the USA. I knew more than my caregivers at this point as they were giving up on me- you see, there is not a pill on this planet that they could sell me to cure this. And so, I had come to the realization that every person is the author of his or her own health.
2018: I TOOK TO THE MAINLAND
After years of no improvement or somewhat slowing down the progression, with just one working limb left, my family and I looked to the mainland for another opinion. In May of 2018, I took it upon myself to go to Seattle, Washington in hopes of finding some help. It was at that time that I was informed by doctors that I did not just have the usual Relapsing-Remitting Multiple Sclerosis (RRMS), but rather I had a RARE and AGGRESSIVE form of MS known as Primary-Progressive Multiple Sclerosis (PPMS) and even within the PPMS realm I was the rarest of them all progressing this quickly in just three years. None of the treatments or medications I endured so far was doing me any good.
Since then, I have had to travel back and forth to Seattle for treatments that is not available in Hawaii or covered by insurance. The traveling has put a strain on us financially as I need my husband and daughter to accompany me since it would be impossible for me to make the trip alone. This past July, we had to spend two weeks in Washington to start my newly released treatment through infusion. Those trips cost us over $17,000. I am officially out of work due to my current level of disability and inadequate access to my classroom where I teach middle and high school science. Even worse, I'm about to lose my insurance, just days before my $121,000 treatment on the mainland. I need this treatment to halt the progression of my disease in hopes of being able to watch my daughter grow, ride in the rodeo, and learn about the cowgirl life that I once lived. Today unable to mobilize freely, I sit hoisted in the trailer and watch her rodeos on my phone from the videos people send me.
WHAT I NEED FROM YOU TO GET BACK IN THE SADDLE
I am hoping to purchase an Action Trackchair (as seen in the picture above) and here in this link http://actiontrackchair.com/ so that I can travel on the ranch and rodeo terrain watching my daughter perform in person and surround myself with people again, more importantly my family.
The video below shows how the Action Tracker gave a cowboy back his life after losing his legs and how it helped a bride "walk" down the isle and stand up before her groom.
Trackchair wheelchair videos, http://actiontrackchair.com/videos/
Since it is getting harder for me to get in and out of my car, I sit and watch my family do everything from afar. I need to have it modified so that I can get a wheelchair in and out of it independently. This modification would allow me to go to the doctor BY MYSELF, get a bite to eat at a restaurant of choice BY MYSELF, pick up my daughter BY MYSELF. I would be able to go grocery shopping BY MYSELF. My vehicle is my only freedom. Right now my car IS my legs. Without it I’m convinced I would be in a nursing home unable to care for myself independently.
All these things cost money. The motorized wheelchair costs $28,000; to modify my car starts at $30,000; a bed that I can get on and off of is $10,000; as well as making our home safe and handicap accessible so I can remain home alone safely, and help prepare meals to be the mom and wife I am.
Car Modification video, https://www.youtube.com/watch?v=f2cx83xL3QU
To help me regain independence, function, and mobility, and to stay out of a wheelchair I need a Bioness system for my legs that costs $23,200 so that I walk again. Right now I use a brace that is cutting off circulation in my legs, shrinking my calf muscle and preventing me from standing. I also need, $5,580 for a Bioness system to make my hand work again. I would give anything to be able to get in and out of the shower by myself and to be able to brush my own hair or simply carry my own cup of water.
Here is a video of the Bioness system for my leg. Because I have footdrop I am unable to lift my toes/foot while walking. This device will fix that by shocking my nerves with each step lifting my foot clearing the ground so that I can walk again! Here, what it looks like, https://www.youtube.com/watch?v=82iErxLZS_k
This next procedure is my last attempt to stop the progression of this disease before heading to Clínica Ruiz in Mexico for an HSTC procedure that is potentially dangerous for a person with my type of MS and my condition. Many have died from sepsis following this procedure due to having zero immune system from the harsh chemo use to wipeout the system, as they are unable to fight their own gut bacteria.
Given that this is one of my last hopes of slowing the progression of my aggressive PPMS here in the US, there is no question for me that it’s worth the time, energy, financial burden and personal exposure. As I said in the beginning, this GoFundMe plea is the hardest thing I will ever do and write, as I peel away all the tough layers my family and I have put up, shielding others of the suffering that really goes on behind closed doors.
I am 39 years old. I have only had a chance to have one child, when we hoped for many more. Yes, I have a commode two feet away from my bed so that I can use the restroom because I cannot walk in my home once these painful braces come off. Yes, my husband has to give me a bath and wash and brush my hair. And yes, my 8-year-old daughter is like a service dog, running all over the place helping me and her dad fetch things as he attends to me. She is also my very own nurse, and she has seen and done things for me no child her age should ever have to do or experience. Yes, I can’t carry a cup of coffee or a glass of water and walk at the same time. YES, I CAN’T DO THESE THINGS AT THE MOMENT, BUT I CAN AND I WILL WITH YOUR HELP! I am not dead yet. With the right treatment, tools and accommodations, I WILL DO THESE THINGS AGAIN! I PROMISE.
As I said early on in this paper, every person is the author of his or her own health. So, what do you say? Help me write the next chapter, this time with a happy ending..
Mahalo Nui and Aloha for taking the time in reading this personal plea.
*Photos, Videos and Updates to come.
All the Best,
Shannon
Co-organizers (7)
Shannon De Luz
Organizer
Honokaa, HI
Marian Maxwell
Co-organizer
Kennie Lee Bender
Co-organizer
Julie Brown
Co-organizer
Char N Kau
Co-organizer