Help Randi Fight MS
Donation protected
I was diagnosed with Multiple Sclerosis (MS) in January of 2015.
MS is a disease in which the immune system attacks the protective coating on nerves within the central nervous system, causing this coating to deteriorate (and can also destroy the nerve itself), leading to miscommunication between the nerves and the rest of the body. Symptoms range from mild tingling and/or numbness to more severe symptoms such as loss of vision, weakness, problems with swallowing, cognitive issues, problems with walking and even paralysis.
Three months prior diagnosis my left arm suddenly went numb and weak. This lasted over a month, eventually resolving to a mild tingling.
It wasn't until I woke up one morning in January to a numb right leg that I admitted to myself something was seriously wrong and I sought help. By the time I saw a neurologist a week later, I was completely numb in both legs from the waist down. The ordered MRIs showed several lesions (areas of attack) both on my brain and spine.
I have seen 3 different specialists regarding my diagnosis, all have agreed on one thing: my MS is particularly aggressive, therefore I was immediately started on the most aggressive treatment there is for MS, bypassing the traditional medications.
In March 2016 I went to Chicago for an evaluation with Dr. Richard Burt - Chief of The Division of Immunotherapy at Northwestern University.
The Division of Immunotherapy and Autoimmune Diseases (DIAD) at Northwestern University is the only center in the world devoted to a unique area of treatment and research that provides intensive immunosuppression and hematopoietic stem cell transplantation (also known as HSCT) for patients with severe autoimmune diseases (such as MS).
This treatment uses chemotherapy to "wipe out" your current malfunctioning immune system, followed by transplantation of ones own stem cells to help with growth of a new immune system, basically "resetting" your immune system to that of one before MS.
The main goal is to stop progression of the disease and put it into permanent remission. After transplant there is no longer a need for MS medications. Many also have symptom relief and some even experience disability reversal, something no current MS medication can do. Dr. Burt began his research in the 1990's and has been performing stem cell transplants for various autoimmine disease for years. Learn more about HSCT here .
Dr. Burt met with me, having already reviewed my medical records, past MRIs, as well as the MRIs I had done that same morning. He told me that I was in need of even more aggressive treatment , would benefit from HSCT and offered treatment on a compassionate basis!
I am scheduled for 3 days of pre-testing at the end of May, then I'm to return to Chicago for the initial chemotherapy on June 17th. At this point I will be treated outpatient and required to stay within 10 minutes of the hospital. During this time I will self inject with Neupogen, stimulating new stem cells to grow, these stem cells will be collected about a week later and saved to be reintroduced into my body during the last phase of treatment. Mid July, I will be admitted to Northwestern for 10-15 days for the final round of treatment. During this time I receive several more rounds of chemo, rATG (immunosuppresant), steroids and several other media stions to help with side effects. The goal of this is to "wipe out" my current immune system. July 18th I get my stem cells back! My new birthday! From there my new immune system will develop and I will be discharged once my labs reach target numbers.
While insurance will cover the cost of treatment during hospitalization portion, it does NOT cover travel back and forth to Chicago, certain needed medications pre and post transplant, post transplant therapies or hotel, parking and living expenses for the outpatient portions of treatment.
This treatment will also require significant unpaid time off work (I'll be out until around 8/31/16).
ANY help is appreciated. Every donation helps, no matter how small. This transplant gives me hope for the future, a real hope I have not had since diagnosis!
Any donations raised over the goal amount will be used towards the required follow up visits to Chicago and unexpected expenses. And to do the MS Walk next year!!!!
Thank you so much in advance for your support and any contributions!!! It means the world to me and my family.
MS is a disease in which the immune system attacks the protective coating on nerves within the central nervous system, causing this coating to deteriorate (and can also destroy the nerve itself), leading to miscommunication between the nerves and the rest of the body. Symptoms range from mild tingling and/or numbness to more severe symptoms such as loss of vision, weakness, problems with swallowing, cognitive issues, problems with walking and even paralysis.
Three months prior diagnosis my left arm suddenly went numb and weak. This lasted over a month, eventually resolving to a mild tingling.
It wasn't until I woke up one morning in January to a numb right leg that I admitted to myself something was seriously wrong and I sought help. By the time I saw a neurologist a week later, I was completely numb in both legs from the waist down. The ordered MRIs showed several lesions (areas of attack) both on my brain and spine.
I have seen 3 different specialists regarding my diagnosis, all have agreed on one thing: my MS is particularly aggressive, therefore I was immediately started on the most aggressive treatment there is for MS, bypassing the traditional medications.
In March 2016 I went to Chicago for an evaluation with Dr. Richard Burt - Chief of The Division of Immunotherapy at Northwestern University.
The Division of Immunotherapy and Autoimmune Diseases (DIAD) at Northwestern University is the only center in the world devoted to a unique area of treatment and research that provides intensive immunosuppression and hematopoietic stem cell transplantation (also known as HSCT) for patients with severe autoimmune diseases (such as MS).
This treatment uses chemotherapy to "wipe out" your current malfunctioning immune system, followed by transplantation of ones own stem cells to help with growth of a new immune system, basically "resetting" your immune system to that of one before MS.
The main goal is to stop progression of the disease and put it into permanent remission. After transplant there is no longer a need for MS medications. Many also have symptom relief and some even experience disability reversal, something no current MS medication can do. Dr. Burt began his research in the 1990's and has been performing stem cell transplants for various autoimmine disease for years. Learn more about HSCT here .
Dr. Burt met with me, having already reviewed my medical records, past MRIs, as well as the MRIs I had done that same morning. He told me that I was in need of even more aggressive treatment , would benefit from HSCT and offered treatment on a compassionate basis!
I am scheduled for 3 days of pre-testing at the end of May, then I'm to return to Chicago for the initial chemotherapy on June 17th. At this point I will be treated outpatient and required to stay within 10 minutes of the hospital. During this time I will self inject with Neupogen, stimulating new stem cells to grow, these stem cells will be collected about a week later and saved to be reintroduced into my body during the last phase of treatment. Mid July, I will be admitted to Northwestern for 10-15 days for the final round of treatment. During this time I receive several more rounds of chemo, rATG (immunosuppresant), steroids and several other media stions to help with side effects. The goal of this is to "wipe out" my current immune system. July 18th I get my stem cells back! My new birthday! From there my new immune system will develop and I will be discharged once my labs reach target numbers.
While insurance will cover the cost of treatment during hospitalization portion, it does NOT cover travel back and forth to Chicago, certain needed medications pre and post transplant, post transplant therapies or hotel, parking and living expenses for the outpatient portions of treatment.
This treatment will also require significant unpaid time off work (I'll be out until around 8/31/16).
ANY help is appreciated. Every donation helps, no matter how small. This transplant gives me hope for the future, a real hope I have not had since diagnosis!
Any donations raised over the goal amount will be used towards the required follow up visits to Chicago and unexpected expenses. And to do the MS Walk next year!!!!
Thank you so much in advance for your support and any contributions!!! It means the world to me and my family.
Organizer
Randi Juarez
Organizer
Mooresville, NC
Inspired to help? Start a fundraiser for someone you know
