- R
Hey everyone.
For those of you who don’t know me, my name is Kennedy Guttormson.
I’m currently hoping to raise money to put towards making memories with my loved ones by going on an accessible trip with them/helping pay for extra medical equipment that isn’t covered by insurance but would greatly improve my quality of life.
I’m a 20 year old living in Manitoba Canada and before getting severely ill I was a gymnast, unicyclist, multi-instrument player, makeup artist, and lover of all things nature and animals. I was attending university in hopes of getting a bachelor of science degree before moving forward somewhere in the fields of healthcare, diagnostics, medicine, or pharmacology. I was an extremely active and sporty person my entire life, while also having a passion for the sciences as well as picking up odd skills here and there such as sewing, crocheting, baking, cooking, etc. I always loved to be busy as long as I was feeling physically okay to do so.
Although we know I was sick since birth, I was doing pretty good until I turned 18 in may of 2020. Since I was born, I’ve had small intestinal dysmotility and mild malabsorption syndrome, as well as more severe colon dysmotility. I also had things like raynaud’s syndrome and chronic migraines since before puberty, as well as noticeable immune system issues (I would constantly be getting things like oral thrush, yeast infections, uti’s, strep throat, impetigo, and other infections that usually don’t appear in teenagers like I was at the time). Although we all knew something was up and I definitely had some sort of undiagnosed disorder, my quality of life was quite great for the most part so there wasn’t a gigantic need to seek out what that diagnosis was. The only large issue big enough to need lots of monitoring that slowly but progressively worsened over the years was the intestinal and colonic motility and malabsorption disorders. From age 3 (when I switched to a fully solid diet) I was in and out of doctors offices getting blood tests, x-rays, exams, etc, all to only ever find that my intestines didn’t work properly but no one could find out why. So from age 3 I was put on a laxative regimen, which slowly increased more and more over the years until by the time I was 10 I was needing a mixture of osmotic and stimulant laxatives every week just to have “normal”(ish) bowel function. By the time I was in my late teens i needed SO many laxatives to actually go to the bathroom regularly that we were getting concerned, as taking tons of laxatives also comes with tons of pain.
Then at 18 when I got my appendix removed, I had a postoperative ileus/complete bowel obstruction which we realized happened due to my predisposition to motility issues. My bowels only ever worsened from there even after the ileus cleared up, and soon after my stomach followed. I could no longer eat and drink enough to sustain myself even though I seemed to be eating a fair amount- leading to the diagnosis’s of gastroparesis and malabsorption syndrome. I also had worsening autonomic nervous system problems that we also realized were present in my entire childhood but overlooked as anxiety- until again they became severe enough to actually be caught on medical tests. I started needing lots of IV fluids and mobility aids to keep myself standing and alive, but it was never enough and by the time I got a feeding tube I was dangerously malnourished, underweight, and had things like hair loss and amenorrhea. From the feeding tube came pain and talk of other tubes- cecostomy tubes, j tubes, and central lines. Although my feeding tube improved my life drastically, it also wasn’t enough with the combined severe motility disorders and malabsorption syndrome, leading me to where I am right now- in a hospital bed laying awake all night waiting for a Hickman line to be placed in my chest to start TPN.
We know my health has never been good, but at this point there has not only been talk of premature death due to my conditions- but also of medically assisted suicide to get rid of the pain I’m in on a daily basis.
These past few weeks have really shown me just how fragile my life is currently- I somehow managed to get a full blown blood infection and sepsis from a regular peripheral IV line and a bacteria naturally found on everyone’s skin- meaning my immune system is also worse than we thought. I now need to be fed through my heart into a very invasive line which will hang out of my chest and come with insane risks that can be very easily deadly, and among every other aspect of my illnesses, this has unfortunately showed us that although I could possibly still live a normal lifespan- the chance of me dying prematurely has risen significantly over the last little while. For example when I had sepsis I had an IV taken out from it getting sore- I went to bed with a sore arm and woke up 2 hours later septic with a full blown bloodstream infection (aka if I had even slept another few hours I could’ve been in critical care). So while I always try to be optimistic and hope I’ll be able to keep strutting along in life, I could easily die in a matter of days from either my conditions or complications of my conditions/medical devices. The chance I could live to 80 years old always remains- but is very unlikely- at least looking at it now from the awful point my health is at currently. Even if I do manage to live quite long, I have been becoming more physically disabled and unable to do what I used to, meaning I don’t even know if I do live another 10 years if I’ll be completely confined to a wheelchair and need home care just to live.
So in short now, I want to make memories with my family and my partners family whom I’ve been with for nearly 3 years now. The uncertainty about whether I’ll live long/lose way more physical abilities to my illnesses is VERY large right now- and even if I manage to keep my health at a plateau for a few years I’ll never be able to make these memories that I want my parents and partners family to have with me while I still have the abilities I currently possess, due to being on disability, I’ll never be able to afford more than a trip to a restaurant here and there or maybe a more expensive activity 1x every few years. Disability pays me $400 a month, and on top of that if I make any extra from working, I will have 70% of whatever I make over $200 a month myself taken by the government. I know I’m not getting off disability at least for a good few years, and I’m not going to let these years pass me by when they quite possibly could be the last few years I’m capable of doing anything physical or (less likely but still very possible) may be the last years of my life.
My family and partners family deserve to have special memories with me, and the uncertainty of my life in the coming years is just too large to let them pass by with only an occasional restaurant trip here and there.
Therefore, this gofundme is specifically to put money aside for a trip somewhere warm for our families in which every hotel, method of transportation, and activity is disability inclusive. If more money is given than we need for that, it will go towards things like an electric scooter (the type you see old people driving around stores) or electric wheelchair attachment- as well as a plethora of other medical accessories that aren’t covered but would benefit me very greatly which i otherwise couldn’t afford.
So in all, no money would go to anything else besides a few experiences for me to share with my loved ones, as well as expensive medical devices and accessories which would really really improve my quality of life. Anything is greatly appreciated and if you don’t want to/can’t donate I would appreciate a share just as much.
Thanks again for listening,
-Kennedy
For those of you who don’t know me, my name is Kennedy Guttormson.
I’m currently hoping to raise money to put towards making memories with my loved ones by going on an accessible trip with them/helping pay for extra medical equipment that isn’t covered by insurance but would greatly improve my quality of life.
I’m a 20 year old living in Manitoba Canada and before getting severely ill I was a gymnast, unicyclist, multi-instrument player, makeup artist, and lover of all things nature and animals. I was attending university in hopes of getting a bachelor of science degree before moving forward somewhere in the fields of healthcare, diagnostics, medicine, or pharmacology. I was an extremely active and sporty person my entire life, while also having a passion for the sciences as well as picking up odd skills here and there such as sewing, crocheting, baking, cooking, etc. I always loved to be busy as long as I was feeling physically okay to do so.
Although we know I was sick since birth, I was doing pretty good until I turned 18 in may of 2020. Since I was born, I’ve had small intestinal dysmotility and mild malabsorption syndrome, as well as more severe colon dysmotility. I also had things like raynaud’s syndrome and chronic migraines since before puberty, as well as noticeable immune system issues (I would constantly be getting things like oral thrush, yeast infections, uti’s, strep throat, impetigo, and other infections that usually don’t appear in teenagers like I was at the time). Although we all knew something was up and I definitely had some sort of undiagnosed disorder, my quality of life was quite great for the most part so there wasn’t a gigantic need to seek out what that diagnosis was. The only large issue big enough to need lots of monitoring that slowly but progressively worsened over the years was the intestinal and colonic motility and malabsorption disorders. From age 3 (when I switched to a fully solid diet) I was in and out of doctors offices getting blood tests, x-rays, exams, etc, all to only ever find that my intestines didn’t work properly but no one could find out why. So from age 3 I was put on a laxative regimen, which slowly increased more and more over the years until by the time I was 10 I was needing a mixture of osmotic and stimulant laxatives every week just to have “normal”(ish) bowel function. By the time I was in my late teens i needed SO many laxatives to actually go to the bathroom regularly that we were getting concerned, as taking tons of laxatives also comes with tons of pain.
Then at 18 when I got my appendix removed, I had a postoperative ileus/complete bowel obstruction which we realized happened due to my predisposition to motility issues. My bowels only ever worsened from there even after the ileus cleared up, and soon after my stomach followed. I could no longer eat and drink enough to sustain myself even though I seemed to be eating a fair amount- leading to the diagnosis’s of gastroparesis and malabsorption syndrome. I also had worsening autonomic nervous system problems that we also realized were present in my entire childhood but overlooked as anxiety- until again they became severe enough to actually be caught on medical tests. I started needing lots of IV fluids and mobility aids to keep myself standing and alive, but it was never enough and by the time I got a feeding tube I was dangerously malnourished, underweight, and had things like hair loss and amenorrhea. From the feeding tube came pain and talk of other tubes- cecostomy tubes, j tubes, and central lines. Although my feeding tube improved my life drastically, it also wasn’t enough with the combined severe motility disorders and malabsorption syndrome, leading me to where I am right now- in a hospital bed laying awake all night waiting for a Hickman line to be placed in my chest to start TPN.
We know my health has never been good, but at this point there has not only been talk of premature death due to my conditions- but also of medically assisted suicide to get rid of the pain I’m in on a daily basis.
These past few weeks have really shown me just how fragile my life is currently- I somehow managed to get a full blown blood infection and sepsis from a regular peripheral IV line and a bacteria naturally found on everyone’s skin- meaning my immune system is also worse than we thought. I now need to be fed through my heart into a very invasive line which will hang out of my chest and come with insane risks that can be very easily deadly, and among every other aspect of my illnesses, this has unfortunately showed us that although I could possibly still live a normal lifespan- the chance of me dying prematurely has risen significantly over the last little while. For example when I had sepsis I had an IV taken out from it getting sore- I went to bed with a sore arm and woke up 2 hours later septic with a full blown bloodstream infection (aka if I had even slept another few hours I could’ve been in critical care). So while I always try to be optimistic and hope I’ll be able to keep strutting along in life, I could easily die in a matter of days from either my conditions or complications of my conditions/medical devices. The chance I could live to 80 years old always remains- but is very unlikely- at least looking at it now from the awful point my health is at currently. Even if I do manage to live quite long, I have been becoming more physically disabled and unable to do what I used to, meaning I don’t even know if I do live another 10 years if I’ll be completely confined to a wheelchair and need home care just to live.
So in short now, I want to make memories with my family and my partners family whom I’ve been with for nearly 3 years now. The uncertainty about whether I’ll live long/lose way more physical abilities to my illnesses is VERY large right now- and even if I manage to keep my health at a plateau for a few years I’ll never be able to make these memories that I want my parents and partners family to have with me while I still have the abilities I currently possess, due to being on disability, I’ll never be able to afford more than a trip to a restaurant here and there or maybe a more expensive activity 1x every few years. Disability pays me $400 a month, and on top of that if I make any extra from working, I will have 70% of whatever I make over $200 a month myself taken by the government. I know I’m not getting off disability at least for a good few years, and I’m not going to let these years pass me by when they quite possibly could be the last few years I’m capable of doing anything physical or (less likely but still very possible) may be the last years of my life.
My family and partners family deserve to have special memories with me, and the uncertainty of my life in the coming years is just too large to let them pass by with only an occasional restaurant trip here and there.
Therefore, this gofundme is specifically to put money aside for a trip somewhere warm for our families in which every hotel, method of transportation, and activity is disability inclusive. If more money is given than we need for that, it will go towards things like an electric scooter (the type you see old people driving around stores) or electric wheelchair attachment- as well as a plethora of other medical accessories that aren’t covered but would benefit me very greatly which i otherwise couldn’t afford.
So in all, no money would go to anything else besides a few experiences for me to share with my loved ones, as well as expensive medical devices and accessories which would really really improve my quality of life. Anything is greatly appreciated and if you don’t want to/can’t donate I would appreciate a share just as much.
Thanks again for listening,
-Kennedy