News story done by Channel 8 KLKN TV
This is the my most recent video. We need to spread the word about HSCT! Please help us! <3
My Story
Hello, my name is Courtney and I want to tell you a little about myself. I am wife to my wonderful husband James, and the mommy of two amazing little boys, Quin who is 9, and Trase who is 7. I am currently in school hoping to become a medical laboratory technician. My family means everything to me, they are the reason I fight! For many years I struggled with my health, I went from doctor to doctor, but no one could figure out what was “wrong” with me. I kept getting diagnosed with many different diseases I didn’t actually have, and I was treated like a guinea pig. I was put on one medication after the next always having something go wrong. I decided I couldn’t keep going on that way and gave up on doctors all together. I kept getting worse and worse until one day I decided to go to my local chiropractor because I couldn’t walk without tripping on my own foot. Within 15 minutes of being in her office, she told me she thought I had multiple sclerosis and referred me to the ms clinic. That day changed everything for me. I soon found myself in the care of an amazing doctor who indeed diagnosed me with relapsing remitting multiple sclerosis. Multiple sclerosis is a progressive autoimmune disease where the immune system attacks the central nervous system in the brain and spinal cord. I have been on multiple disease modifying drugs to try and delay the progression, but my ms is quite stubborn! I currently receive Tysabri infusions, and I’d be lying if I didn’t say I’m scared for my life every day because of it. The medications for ms are all a risk of their own and they have terrible side effects, many of them just as scary as ms itself. The Tysabri i’m on can cause pml which is basically a death sentence. Sadly, I suffer from a lot of issues due to my ms and they will only continue to progress further and further. I get pain and numbness and tingling randomly in my limbs, sometimes it lasts an hour and other times a month. I have a terrible foot drop on my left side that makes it nearly impossible to get around without the help of my brace, and running is certainly out of the question even with my brace. The entire left side of my body is weaker than the right and it has less feeling as well. Unfortunately I am left handed so I often find myself frustrated when trying to write or cook or clean because this side is weak. I have a lot of issues with my bladder not wanting to work correctly, I have urgency and hesitation and frequency all working against me at times and it can get quite terrible. It’s a chore to wake up in the middle of the night needing to go NOW and having to trip over my foot and fumble to the bathroom in hopes of making it in time. I would have to say my most hated problem from this nasty disease is my cognitive function, or lack of I should say. I have a terrible time remembering things and I feel as if I'm always in a fog. I have issues getting out what I want to say, I know the info is in there, I just can’t seem to get it out. It gets very frustrating and it really makes me feel down about myself. It makes school very difficult and it makes me feel stupid, but I swear, there is a smart girl in there somewhere! I often find myself in what I like to call zombie mode, I am there and I am functioning, but it’s like I’m on auto pilot. I am always fatigued, I feel like I could sleep all day, but I am a mommy and my day is never really done! I hate to say this, but at times I feel like my life is passing me by. I feel like I'm a burden to those I love. I cannot run with my boys, I cannot do the things that many other mommies can and it kills me inside. That’s not how I want to feel anymore, I want to be free from this monster and I want to have a new chance at life. I want to be the mom/wife/daughter/sister/friend I truly am inside. I just want to be me again, not me who has ms, just ME!
I want to tell you all about HSCT (Hematopoietic stem cell transplantation) which is a reboot for the immune system. With HSCT your stem cells are harvested after a series of injections to help bring them out. After your cells are harvested you are given a large dose of chemotherapy to basically kill off your immune system and wipe its memory clean. Once the chemo process is done, your stem cells are transplanted back into your body and you then have a “new” immune system without the memory of ms. After receiving this treatment, you don’t have to take any nasty disease modifying drugs because you have halted your ms! That is right this treatment HALTS the ms, how amazing is this?! Unfortunately, this procedure is not offered to patients like me here in the U.S. (they do it on "trials", but the cost ranges from $125,000-$355,000) and I am left seeking treatment out of country since the cost is far more attainable. I have talked to many ms patients who have had this done, and it is truly a miracle procedure. Not only have people who were wheelchair bound by their ms gotten back the ability to walk, but most patients have fully stopped their ms and regained function once thought lost forever. Sadly, to take this amazing opportunity I will need to raise at least $50,000. I know this is a large amount, but I am willing to do whatever it takes to make this happen. Thanks to all who have read/shared/donated, I would not be able to take my life back without you!
<3 Courtney
I want to tell you all about HSCT (Hematopoietic stem cell transplantation) which is a reboot for the immune system. With HSCT your stem cells are harvested after a series of injections to help bring them out. After your cells are harvested you are given a large dose of chemotherapy to basically kill off your immune system and wipe its memory clean. Once the chemo process is done, your stem cells are transplanted back into your body and you then have a “new” immune system without the memory of ms. After receiving this treatment, you don’t have to take any nasty disease modifying drugs because you have halted your ms! That is right this treatment HALTS the ms, how amazing is this?! Unfortunately, this procedure is not offered to patients like me here in the U.S. (they do it on "trials", but the cost ranges from $125,000-$355,000) and I am left seeking treatment out of country since the cost is far more attainable. I have talked to many ms patients who have had this done, and it is truly a miracle procedure. Not only have people who were wheelchair bound by their ms gotten back the ability to walk, but most patients have fully stopped their ms and regained function once thought lost forever. Sadly, to take this amazing opportunity I will need to raise at least $50,000. I know this is a large amount, but I am willing to do whatever it takes to make this happen. Thanks to all who have read/shared/donated, I would not be able to take my life back without you!
<3 Courtney