My Journey with Multiple Sclerosis…And What I Hope to do Next, with YOUR Help!
What do homeschooling, holistic medicine, teaching a Sunday
school class, and fundraising to travel to a foreign country for a medical
treatment not available in the U.S have in common? If you answered absolutely
nothing at all, that would be... incorrect! However, if you intuitively
answered that they were random things that Rebecca 'told God' in the last few
years, "No way, not a chance, never!" to, but God then said,
"Haha! You're really funny. That's what you think," then you would be
absolutely 100% correct & you win the prize of great self-satisfaction! 😁
I'm in the midst of a twist. As you know, I have Multiple Sclerosis (MS). There's no cure for it, & I'm totally fine with that... "It's all good!" [Yes, I totally just quoted myself there.] I've done so many different things to manage my symptoms over the past 11 years... diet, daily MS drug injections, an alternative compounded med, holistic treatments... In fact, I went from 100% holistic all the way to big pharma [Lemtrada], which can be considered (for the ease of an uber quick description) a half-dose chemotherapy. Anyone who infuses Lemtrada, hopes that it will be their last MS med ever. Most "Lemmies" go through two rounds of the treatment, one year apart. I've done three. In fact, I was only the second person my MS Specialist had ever approved for a third round. I've experienced benefits from each round, however, other symptoms continue to progress. I am currently in the secondary progressive stage of MS and things are getting more difficult to manage, both for me as well as for my husband and family. I don’t want to sound defeated, because I am NOT, but MS has taken me on a very difficult journey and I have been told I won’t recover what I have lost. I am looking to stop future progression (which could make life even more difficult) from happening!
I'm in the midst of a twist. As you know, I have Multiple Sclerosis (MS). There's no cure for it, & I'm totally fine with that... "It's all good!" [Yes, I totally just quoted myself there.] I've done so many different things to manage my symptoms over the past 11 years... diet, daily MS drug injections, an alternative compounded med, holistic treatments... In fact, I went from 100% holistic all the way to big pharma [Lemtrada], which can be considered (for the ease of an uber quick description) a half-dose chemotherapy. Anyone who infuses Lemtrada, hopes that it will be their last MS med ever. Most "Lemmies" go through two rounds of the treatment, one year apart. I've done three. In fact, I was only the second person my MS Specialist had ever approved for a third round. I've experienced benefits from each round, however, other symptoms continue to progress. I am currently in the secondary progressive stage of MS and things are getting more difficult to manage, both for me as well as for my husband and family. I don’t want to sound defeated, because I am NOT, but MS has taken me on a very difficult journey and I have been told I won’t recover what I have lost. I am looking to stop future progression (which could make life even more difficult) from happening!
So,
all of this brings us to this moment... as of right now, there is one more
opportunity to halt the progression of my MS… and, it is just in time, as my
disability score is at the top of what is accepted for this treatment. It comes
in the form of something called HSCT (Hematopoietic Stem Cell Transplant). HSCT
uses high-dose chemotherapy to ablate my immune system. My previously harvested
stem cells are then reinserted to help with the recovery of obliteration. HSCT
has actually been around for decades and has been used for cancer and other
autoimmune conditions. However, it isn't until the last few years that it has
also been used for MS. While there are a few limited (extremely expensive, $120,000-$200,000)
trials for it going on inside of the United States (for which I have found out
I don't qualify), there are other options available... They do require a stamp
in the passport & the entire fee for the month-long procedure paid in full, two months ahead of time.
Enter Clinìca Ruiz, in Monterrey, Mexico. The efficacy & safety of their HSCT protocol is amongst the top in the world. The cost for having HSCT done there, plane tickets, etc… is $65,000. That is the fundraising goal we are taking on! I have to be real transparent here... we don't have that money. Okay, we've had to spend a lot of money on my health over the years & we don't have anything extra for this. So, in order for this treatment to be a possibility, I would need to raise money for the treatment, as well as money for the airfare, food, other fees, and even tips for staff at the treatment center. As you might imagine, a caregiver is required for this treatment. My husband will come for some of the time and my amazing Mom has offered to come for the rest.
I have set up a fundraising account at givetaxfree.org, to
officially kickoff my fundraising! This
is a non-profit organizations, which if you donate, can provide you with a
receipt to write off on your taxes. I also have set up a GoFundMe page. As any
for-profit business, GoFundMe keeps an 8% commission, so I also encourage givetaxfree.org,
PayPal, or a contribution sent directly. Information you need is listed below
givetaxfree.org
GoFundMe
PayPal
Facebook
Rebecca’s
HSCT Adventure
God has taken me (and my family) on this journey... this amazing, twisty, throw you upside down, but exciting, because He's in control kind of journey. I can't thank-you enough for being part of it!
Your Friends,
Rebecca…
and Phil, Philip, & Elodie
Summer 2018
Phil, Philip, Elodie, Moi, Kylee
(We obviously need an updated family photo!)
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