Stem Cell Transplant To Fight MS
Donation protected
Well, friends. This is probably the very last thing I ever imagined myself doing... But as I've recently realized - I have no other option but to give it a try.. [I want to apologize in advance for the lengthy read - but I felt that every single last word here is entirely necessary]
So where do I begin..
Since the delivery of my (only child) Salem - whom I'd love for you all to meet:
-- (who is now 11 months old) my health has been nothing short of deteriorating. I had been in and out of the hospital and clinics feeling unwell for a couple years in fact and no one could seem to figure out what was going on with me due to the "random" symptoms. Through all of these very frustrating and otherwise fruitless attempts at finding answers - (and one more desperate stop at the local emergency department) we did eventually find out that I have Hashimotos Thyroiditis (autoimmune hypothyroid disease)
A couple of months following that event (2, to be exact. July 3/2016) I out of nowhere experienced the most horrific, terrifying, excruciating, FULL BODY attack that had me back at the emergency department... (I could not walk, could not lift/use my arms, couldn't see, hear, speak properly etc) -- Which led to a 3 week hospital admission - It was confirmed through many agonizing tests (Spinal Tap!) that I also have MULTIPLE SCLEROSIS. This thyroid disease alone would debilitate someone and tremendously decrease their quality of life, now throw in one of the most debilitating, life destroying, crippling diseases one can encounter in a life time - which is MS.. (Along with fibromyalgia, CFS, etc) --- And we've got a seriously unwell new mother who needs some help, and fast!
As many of you may know, there is NO CURE for MS. It is a chronic demyelinating (autoimmune) disease of the central nervous system that effects the brain, spine and optic nerves. The sufferers immune system attacks its own (fatty material) called myelin, which wraps around nerve fibers to protect them. Without it the nerves become damaged/scarred. This results in the brains inability to properly send signals to the body and the nerves no longer function correctly which cause the individuals symptoms and ever increasing disability. These symptoms/effects range from mild-moderate-absolutely debilitating. There are different types of MS, and not one persons disease is alike another's. This is key for all sufferers and their family members/care givers to spare in mind.
That all being said. Aside from disease modifying drugs which may help in some cases to slow down the disease progression (which cost on average $5,000.00 per month ) there has been no real hope for long term/potentially permanent relief for many MS patients... Until recently.
Researchers have found that HSCT (Autologous Haematopoietic Stem Cell Transplantation) can be very effective for many MS patients. This treatment basically wipes out your immune system - and then reboots it - in attempt to have the patient's immune system forget that the disease existed, for lack of better terms. It is like giving the body a second chance. This approach has been used to effectively treat certain cancers for many years - it is a combination of chemotherapy and stem cell transplantation (of the patients own stem cells) coupled with individualized post treatment therapies and overall wellness management. This is thought to be a form of "cure" for some patients and in many it entirely halts the progression of the disease! This treatment must be done ASAP to help preserve function and mobility, hence the urgency in gathering the funds to organize it.
This is literally the only hope for me to possibly attempt returning to a semi normal life one day. To be able to care for my son, as a young mother should. To be able to stand, walk, and drive... Think clearer and find some (ANY) relief in many of my incredibly debilitating symptoms, and my pain which to date has been a beast no one can tame. I spend most of my time in bed (3 months straight now) and my quality of life is absolutely gutted at zero... And has been for months as I've been declining steadily... Missing these precious moments with my child.
*****Now. Imagine how exciting the idea of MAYBE "getting better" would be, to someone like me!?*****
This treatment is not available openly to patients in Canada, rather very few as it is still very much a "trial" and being researched here. However, there are MANY approved centres across the globe with very high success rates with this treatment in patients of all conditions and degrees of disability. I do NOT qualify for HSCT in Canada due to the incredibly meticulous eligibility criteria - and therefore I have no choice but to look elsewhere for it.
The costs can range anywhere from $40,000US up to $200,000US and even beyond that. I realize this is incredibly unrealistic but having a single income household and relatively sub par medical benefits (with no out of country coverages) That is the amount I have entered as the end goal as unfortunately - that's almost as cheap as it comes and we need to start somewhere!
I've been led to this to attempt raising a few dollars towards possibly getting myself this treatment, should we somehow miraculously be able to afford it. Unfortunately, due to my aggressive symptoms and now recently getting in to mobility issues, there is also a major need for funds for medical devices and some accessible changes to our home.. never mind the extremely high cost of disease modifying medication.
This all here obviously adds to the unimaginable strain, responsibility and severe financial burden on my husband, Nick (married almost 10 years) - whom I'd also love for you to meet:
-- He has had to take a LOT of time off work due to my illnesses, and he's used up all of his holidays for the year already. He has no choice but to find time between his work schedule to care for me, chauffeur me to my many weekly appointments, as well as now be the primary caregiver for our son. He is truly sailing this 3 man ship on his own and is wearing thin in every which way imagineable. He needs some relief, too.. And this is why I created this campaign myself. I need to find a way to obtain this care that won't put impossible financial strain and guilt on him. We (much like your average family) just simply cannot afford it!!
Can you imagine knowing that you could potentially spare your spouse's, and child's mothers life -- as the possibility DOES exist.. But just don't have the means!? We are truly experiencing what is the definition of a helpless, living nightmare!
Whether or not I can reach my "goal" any time soon - every last cent will help our little family out TREMENDOUSLY. Any and all donations we may be lucky enough to receive will 100% go towards the overall costs of treatment and travel.
I am at a point where I absolutely do not have a thing to lose by trying. I want to thank everyone for reading this. And I appreciate your donations endlessly, whether it be in the form of a monetary donation or well wishes... Thanks SO very much from the bottom of my aching, grateful heart.
So where do I begin..
Since the delivery of my (only child) Salem - whom I'd love for you all to meet:
-- (who is now 11 months old) my health has been nothing short of deteriorating. I had been in and out of the hospital and clinics feeling unwell for a couple years in fact and no one could seem to figure out what was going on with me due to the "random" symptoms. Through all of these very frustrating and otherwise fruitless attempts at finding answers - (and one more desperate stop at the local emergency department) we did eventually find out that I have Hashimotos Thyroiditis (autoimmune hypothyroid disease)
A couple of months following that event (2, to be exact. July 3/2016) I out of nowhere experienced the most horrific, terrifying, excruciating, FULL BODY attack that had me back at the emergency department... (I could not walk, could not lift/use my arms, couldn't see, hear, speak properly etc) -- Which led to a 3 week hospital admission - It was confirmed through many agonizing tests (Spinal Tap!) that I also have MULTIPLE SCLEROSIS. This thyroid disease alone would debilitate someone and tremendously decrease their quality of life, now throw in one of the most debilitating, life destroying, crippling diseases one can encounter in a life time - which is MS.. (Along with fibromyalgia, CFS, etc) --- And we've got a seriously unwell new mother who needs some help, and fast!
As many of you may know, there is NO CURE for MS. It is a chronic demyelinating (autoimmune) disease of the central nervous system that effects the brain, spine and optic nerves. The sufferers immune system attacks its own (fatty material) called myelin, which wraps around nerve fibers to protect them. Without it the nerves become damaged/scarred. This results in the brains inability to properly send signals to the body and the nerves no longer function correctly which cause the individuals symptoms and ever increasing disability. These symptoms/effects range from mild-moderate-absolutely debilitating. There are different types of MS, and not one persons disease is alike another's. This is key for all sufferers and their family members/care givers to spare in mind.
That all being said. Aside from disease modifying drugs which may help in some cases to slow down the disease progression (which cost on average $5,000.00 per month ) there has been no real hope for long term/potentially permanent relief for many MS patients... Until recently.
Researchers have found that HSCT (Autologous Haematopoietic Stem Cell Transplantation) can be very effective for many MS patients. This treatment basically wipes out your immune system - and then reboots it - in attempt to have the patient's immune system forget that the disease existed, for lack of better terms. It is like giving the body a second chance. This approach has been used to effectively treat certain cancers for many years - it is a combination of chemotherapy and stem cell transplantation (of the patients own stem cells) coupled with individualized post treatment therapies and overall wellness management. This is thought to be a form of "cure" for some patients and in many it entirely halts the progression of the disease! This treatment must be done ASAP to help preserve function and mobility, hence the urgency in gathering the funds to organize it.
This is literally the only hope for me to possibly attempt returning to a semi normal life one day. To be able to care for my son, as a young mother should. To be able to stand, walk, and drive... Think clearer and find some (ANY) relief in many of my incredibly debilitating symptoms, and my pain which to date has been a beast no one can tame. I spend most of my time in bed (3 months straight now) and my quality of life is absolutely gutted at zero... And has been for months as I've been declining steadily... Missing these precious moments with my child.
*****Now. Imagine how exciting the idea of MAYBE "getting better" would be, to someone like me!?*****
This treatment is not available openly to patients in Canada, rather very few as it is still very much a "trial" and being researched here. However, there are MANY approved centres across the globe with very high success rates with this treatment in patients of all conditions and degrees of disability. I do NOT qualify for HSCT in Canada due to the incredibly meticulous eligibility criteria - and therefore I have no choice but to look elsewhere for it.
The costs can range anywhere from $40,000US up to $200,000US and even beyond that. I realize this is incredibly unrealistic but having a single income household and relatively sub par medical benefits (with no out of country coverages) That is the amount I have entered as the end goal as unfortunately - that's almost as cheap as it comes and we need to start somewhere!
I've been led to this to attempt raising a few dollars towards possibly getting myself this treatment, should we somehow miraculously be able to afford it. Unfortunately, due to my aggressive symptoms and now recently getting in to mobility issues, there is also a major need for funds for medical devices and some accessible changes to our home.. never mind the extremely high cost of disease modifying medication.
This all here obviously adds to the unimaginable strain, responsibility and severe financial burden on my husband, Nick (married almost 10 years) - whom I'd also love for you to meet:
-- He has had to take a LOT of time off work due to my illnesses, and he's used up all of his holidays for the year already. He has no choice but to find time between his work schedule to care for me, chauffeur me to my many weekly appointments, as well as now be the primary caregiver for our son. He is truly sailing this 3 man ship on his own and is wearing thin in every which way imagineable. He needs some relief, too.. And this is why I created this campaign myself. I need to find a way to obtain this care that won't put impossible financial strain and guilt on him. We (much like your average family) just simply cannot afford it!!
Can you imagine knowing that you could potentially spare your spouse's, and child's mothers life -- as the possibility DOES exist.. But just don't have the means!? We are truly experiencing what is the definition of a helpless, living nightmare!
Whether or not I can reach my "goal" any time soon - every last cent will help our little family out TREMENDOUSLY. Any and all donations we may be lucky enough to receive will 100% go towards the overall costs of treatment and travel.
I am at a point where I absolutely do not have a thing to lose by trying. I want to thank everyone for reading this. And I appreciate your donations endlessly, whether it be in the form of a monetary donation or well wishes... Thanks SO very much from the bottom of my aching, grateful heart.
Organizer
Teija MacPherson
Organizer
Sudbury, ON
