Basketball. Champion. Dominance. Taking Flight. Greatness. Nike.
Innovation. Inspiration. Entrepreneurship. Thinking Differently. Apple.
Martin Luther King Jr.
Equality. Oration. Social Change. Having a Dream. Nonviolent Protest. Civil Rights.
Hero. Empowerment. Optimism. Perseverance. Bravery. Hope. HSCT.
Does someone stand out on this list?
Good, she should.
Randi Juarez hasn’t won six NBA Finals MVPs or created one of the most groundbreaking tech companies the world has ever seen. She hasn’t even uprooted the racial and civil landscape of America either. Yet what Randi has done, makes her a fellow praiseworthy innovator as well as the face of a powerful movement.
There are few things more aggravating than when your arm goes numb after an awkward night's sleep and what was once your most vital appendage starts to feel like nothing more than lifeless, detached deadweight. Sometimes this irksome feeling persists and it’s bad enough that you think you might have even pinched a nerve. But you take some Tylenol and uncomfortably get by for a couple of hours, or a few days, at worst a week or two, until the unnerving feeling finally subsides. And your life goes back normal. Or…
Three months go by and the numbness never relents. In fact, it gets worse and one morning you wake to find your leg has gone numb too. Maybe you’re just a weird sleeper and you need a body pillow to stop you from suffocating your own limbs? But at this point you’re a little worried after reading a few WebMD articles, so you give in and make a reluctant trip to the doctor’s office. After an hour of what sounds like the world’s most complex copy machine trying to make enough giant full-color posters for all of humanity, you find out two things from your time in the MRI room. As you feared, you are in fact a rather peculiar sleeper, capable of falling asleep in the most disagreeable positions. Also, you have way too many sclerosises, or what is commonly known as, MS.
It all happens very quickly after that, the official diagnosis, the IV infusions every six months, the side effects that mild nausea and “mood variability” don’t even begin to describe, the minimal progress despite the most aggressive treatment plan. You find yourself lying awake at night wondering, “What wouldn’t I do for just a pinched nerve right now?”
Through it all you remain optimistic, but things don’t seem to be going in the right direction, until one day you hear about this amazing new thing called HSCT. You have no idea what is or even what it stands for, but at this point if it’s anything close to “Help Stop Constant Torture”, you’re all ears.
You learn more and find out it actually stands for hematopoietic stem cell transplantation, the first ever MS treatment that is capable of reversing disability. There’s no promise, but the prospect is an undeniably significant breakthrough and a beacon of hope for all those affected by MS. But for some crazy reason, it’s not approved in the U.S. since it remains stuck in the FDA Trial stage, despite being available in a multitude of other developed countries across the world. It’s almost like someone out there has an interest in stopping this revolutionary treatment and potential cure from replacing the current standard in the MS treatment. But no, that would be absolutely insane, right?
So you apply for the FDA trial in Chicago and you don’t quality, but after seeing the severity of your progression, the incredible Dr. Richard Burt makes an exception. Your insurance company agrees to cover the six figure cost of the trial, you raise the money to temporarily relocate your family to Chicago because people are awesome, and before you can say hematopoietic, you’re in the middle of your first round of five straight days of chemo followed another five of stem cell extraction. Through it all you remain brave and never lose hope. You continue to inspire by sharing your journey with the world, all of it, the little victories that keep you going as well as the moments of doubt-filled pain and vulnerability. You rock the bald look with a graceful pride unrivaled by even Natalie Portman in V for Vendetta. You make it through the treatment and force your MS into retreat, but your story doesn’t stop there. You now share the joys of your new life with those who were there when you were at you lowest. You go back to work. You help others as a nurse and as an advocate for the wrongfully accused. You find a new, even deeper connection to people who are fighting for their freedom because you too were wrongfully accused, of being a helpless victim of MS. You maintain your voice and advocate for HSCT in hopes of helping others gain access to the treatment that so drastically altered your life.
You see that Healthcare Still Controls This treatment option and its availability, but together we can demand more from the largest healthcare system in the world. You’re living proof that Happiness Still Conquers Trauma and the slightest bit of Hope Seeds Change Throughout. You show that even though meeting up to Have Some Coffee Together isn’t a reality for all those who share your struggle, an inspiring presence and unbreakable smile affirming that things do get better, can be just as meaningful. Every day you’re an example of how selfless, Honest Service Can Transcend even the greatest of barriers.
You do all of this and so much more because you, Randi Juarez, are the face of HSCT.
Not completely sure what all this means? We wrote you a letter to explain a bit more. Find it here.
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