Zach’s Fight For Her Life against MS

www.facebook.com/ZachsHSCT  Can you donate even as little as $5  to help Zach receive a life saving, out-of-pocket, stem-cell transplant? What if after over two years of seeking treatment for a chronic and debilitating illness you heard these words from your neurologist;  “There is nothing else I can do for you, you will continue to get worse, and in two more years you will most likely no longer be lucid and possibly in a vegetative state.”  Would you accept this fate?  Or would you rally your family and friends and fight with everything you have to save your life? Zachari Townsend, or Zach as she is known to family and friends, has a highly aggressive form of Multiple Sclerosis, (MS).  Basically, her immune system is attacking her brain and spinal cord, and preventing her brain from communicating with the rest of her body.    How aggressive is the illness?  Her latest MS relapse in early July 2019 left her without the ability to verbalize her thoughts for over a week.  Fortunately, her ability to speak has returned, but there is no guarantee that with the next relapse it will.    She can no longer walk without assistance.  Some days that assistance can be in the form of finding stability lightly touching the wall and furniture, some days she needs a cane, and some days even with the help of another person she can barely hold up her own weight.  Think of someone trying to balance on a surfboard or men in a log rolling contest, but Zach is standing on dry unmoving ground.    Many symptoms are similar to those a stroke victim experiences; inability to think of words for objects like pencil, car, or floor, saying one word when she means another, and sometimes the inability to focus on anything at all.    Then there is the pain. The pain strikes without warning. In her face, her arms, her legs. Basically, anywhere that has nerve endings which means any part of her body can be a target for the sudden and unpredictable pain.  Imagine the worst leg cramp you’ve ever had continuing for hours or someone stabbing a hot poker into your cheek.  Now imagine that happening at random times every day, and not being able to predict when or if that pain will stop.    Then of course is the crazy sleeping schedule or lack thereof.  Zach could have insomnia for three days, sleep for an entire day, or find herself falling asleep whenever or wherever she is.  Sounds fun doesn’t it?   Zach refuses to accept that the US’s inability to treat its MS patients means that she must accept entering into a vegetative state at the age of 45.  So Zach set out on a mission to take her future and her life into her own hands.  Through many hours of research, it became clear to her that there was in fact one more option.  There was one last chance to retain and possibly regain her quality of life. This chance comes in the form of a procedure called hematopoietic stem cell transplantation, HSCT.  Has Zach pursued other treatments before HSCT?  Yes, Zach has been given two of the newest disease modifying therapies (DMTs) by her neurologists, but unfortunately neither have worked to slow down the progression of her MS. The relapses continue to occur more frequently and with a vengeance.  Due to other health factors outside of Zach’s control she has been told she is out of options here in the United States.    There are no other treatments available to her.  No chance of remission or healing, just the high likelihood that she will lose all control of her ability to move, to think, to see, and to speak.    Choosing to pursue HSCT is not an easy venture, or one that Zach has taken on without lots of consideration.  The treatment comes with risks and a host of potential side effects, including extreme sickness, infections and death due to no immune system.    The biggest downside to HSCT? The cost of treatment is very expensive. Insurance will not pay for these treatments outside the United States so most patients cannot seek this treatment without raising funds on their own.  This is the case for Zach.  The out of pocket expenses for her stem cell transplant will total $65,000.  A huge goal that must be met by October 5, 2019 to secure her transplant date of January 6, 2020.    Extra time to raise funds is not a luxury Zach has.  Each new MS attack she experiences brings the potential that a stem cell transplant or even remission will no longer be an option. #HelpStopMSFromEatingZachsBrain #ZachsHSCTJourneyBattlingMS