A Hope To Heal MS: My Father's Story
Hello. My name is Ben and my father, George, the recipient of this fund-raising campaign, lives with Multiple Sclerosis (MS), a degenerative, unpredictable, disease of the nervous system that can cause anyplace on his body to totally stop functioning without notice. I have had to watch as It has caused him great difficulty nearly my entire life.
My father is a professor, college administrator, community activist, husband, father of four, and grandfather of four. Through his teachings, he has shaped me into the man that I am today. He has cared for my siblings and I throughout the years while asking for very little in return - though I know he would say that his reward is just having kids to love. Even now, he has taken in and is raising his granddaughter without hesitation or reservation because that is the empathetic and caring man he is. His compassion has taught me to be understanding of others and how to offer help to those in need.
My father has been accepted for a cutting-edge clinical treatment that holds the possibility of alleviate most if not all of the MS symptoms he now experiences. I'd like to tell you why my father is seeking this treatment now and what he has been dealing with for years to get to this point.
But first, here are my father's own words describing his experience with MS.
"My journey with MS began in 1995 when I suddenly started having pain in my left hand and numbness in both hands and feet when I looked down. (As it turns out this is caused by the slight stretch of the spinal cord when lowering one's head. That only becomes a problem when one's nervous system is damaged.) In 1996 I started experiencing daily exhaustion that was, at times, so severe that I literally struggled to get out of bed. It felt like I was buried under a pile of bricks. It's what some MS patients describe as "Mind Numbing" exhaustion. In 1998, my face began twitching to the point my lip would curl up and one eye would wince closed. It was a constant, unmistakable, convulsive, facial twitch. Further, I started experiencing depth perception, problems. After a few months of this I could no longer distinguish between stationary and moving objects, making driving a harrowing experience for me as well as others. The difficulty with depth perception & perceived movement (kind of like dizziness but more like being on a moving platform or on board a ship) developed into difficulty walking and maintaining my balance, particularly on uneven surfaces like stairs, cracked sidewalks, and imperfect lawns or trails.
When I tried to go shopping it's like everything in the store was on a conveyor belt. When I would walk down narrow spaces like store isles... it felt like walking up a down escalator with the walls just floating around me. When I tried looking at items on the shelves, they were blurry like I was looking through glasses covered in Vaseline. I would sometimes even see double (or triple - how that is possible I still don't know).
As a result of these seemingly random symptoms, I never was able to take my children backpacking, a pastime that I so loved in my youth. I couldn't even play catch with them as the ball flying through the air would seem to disappear and reappear as it traveled to or away from me. Like many other MS patients my condition was misdiagnosed as several other things before it was correctly diagnosed in 2001.
On a hot August day, I was trying to move some boxes from storage. When I went to lift a heavy box - using my right leg for extra leverage, it failed to even leave the ground... I had tried to lift my leg, but it never seemed to get the message. I then knew that something was wrong. I had difficulty walking throughout the remainder of the day. That's when I made an appointment with a doctor to find out the REAL root of all these issues.
After a Visual Evoked Potential, spinal tap, and MRI tests, I was finally diagnosed with Multiple Sclerosis (MS). Many MS patients are diagnosed with one or two lesions (scars) on either their brain or spinal cord. When my MRI was read it showed “lesions, consistent with MS, on ALL hemispheres of the brain.” So, my doctor prescribed a treatment plan. Over time, this has turned out to be a series of medications and transfusions. These are called "disease modifying" medications which slow but do not stop the progress of the disease. They, in deed, slowed the rate of relapses (each of which leaves its own unique damage and addition of symptoms) from once every three or four months to once every six months, but nothing thus far has halted the progression of my MS.
First I was put on a once per week, intramuscular, injection delivered through a 1 & 1/2 inch long needle which injected a medication for which one side effect was "flu-like" symptoms (sweats, cold chills, weakness, nausea, the works). These symptoms started as lasting only a couple days after an injection, then three days, then four. At which point, after two years, I told the doctor that another medication had to be found if I was to continue working my regular job. I couldn't work with the flu five days a week.
Second was a three times per week subcutaneous injection of a medication that caused a burning, sore, and swollen knot, like a bee sting, that would last about a week. Over the two years I endured this treatment the "site reactions" continued to worsen to the point where they left a grapefruit-sized mass every time I was injected. Because no one else, including me, could stand any longer to administer the shots, Ben at the age of only 10, had to help inject the medication into my midsection.
When the first oral medication was developed, I was switched to that medication for a time. Unfortunately, this caused prevalent migraine headaches, that I had already dealt with for many years before, without explanation. Finally, I was put on once per month intravenous infusions of a medication that largely stabilized my disease for nearly eight years; although it is not recommended for use for more than two years (because the risk of mortality steadily increases thereafter). Not to mention, I have a genetic condition which makes it not recommendable at all for me due to the possibility of a lethal brain infection known as PML. I continue on the medication, though, because it has for the most part, kept me free of relapses."
As time has proceeded, my father's overall condition has worsened, as is the nature of any degenerative disease.
Most recently he has had a terrible reaction to a treatment for his MS that caused excruciating pain and open sores, then terrible, uncontrollable itching as it healed. He described the feeling like having poison ivy under his skin. After a Plasma infusion my father suffered through something called Steven-Johnson Syndrome. As described on Mayo clinic's website: "Stevens-Johnson syndrome is a rare, serious disorder of your skin and mucous membranes. It's usually a reaction to a medication or an infection. Often, it begins with flu-like symptoms, followed by a painful red or purplish rash that spreads and blisters. Then the top layer of the affected skin dies, sheds and then heals" (Mayo1).
This was an excruciatingly painful experience (for him to go through and for us to watch) while no doctors could do anything to help him. At one point, my father was referred to a burn unit in order to treat the symptoms of this condition.
Here are some pictures taken after returning home from the burn unit:
Seeing my father suffer with Steven-Johnson's syndrome, caused by a treatment for his MS, for over a year has been heartbreaking. Our goal is to help alleviate the symptoms of his MS with a single therapy instead of years of dangerous treatments that have only slowed the MS instead of eliminating or healing it.
My father is seeking to undergo a Hematopoietic Stem Cell Transplant (HSCT) treatment that utilizes his own stem cells from his own bone marrow. The treatment would harvest some of his stem cells and store them while his immune system is destroyed with chemotherapy and then his stored stem cells are returned to his blood stream through an intravenous transfusion to rebuild his immune system anew.
To summarize, the replacement of his own undamaged, stored stem cells collected from his bone marrow, once in his body rapidly regresses or even halts progression of auto immune diseases like MS. My father spends thousands of dollars every year on his treatments. He has monthly IV's that are uncomfortable, at best, and leave him exhausted for days. Meanwhile he continues to accrue large annual medical bills while the disease marches slowly on.
Funds for my father's treatment would entail a one month stay at a medical clinic in Mexico because the treatment, although it is being done in other countries, is not yet approved in the U.S. quite yet. The purpose of this funding request is to cover the cost of harvesting his own bone marrow's stem cells, chemotherapy needed to prep his body for the auto-stem cell replacement, and the cost of a caregiver to tend to him while this treatment progresses. We are hoping that this one-time treatment will cure him and alleviate the need for additional treatments, allowing him to bring his life back to a state of normalcy. We want to leave him with the ability to raise one of his grandchildren without pain and constant exhaustion from his illness. I want him to experience the things he misses most like playing catch with his grandkids or going for a walk without collapsing from exhaustion.
I love my father as much as any son can, and words fail to describe the hope I have that you will find it in your hearts to help us achieve this goal. Anything helps and all proceeds will be put towards medical expenses for my fathers treatment.
This is him further elaborating on the freedoms he hopes to re-gain through this treatment:
Citation:
“Stevens-Johnson Syndrome.” Edited by Mayo Staff, Mayo Clinic, Mayo Foundation for Medical Education and Research, 9 Mar. 2018, www.mayoclinic.org/diseases-conditions/stevens-johnson-syndrome/symptoms-causes/syc-20355936. (Mayo1)
Ruiz, Clinica. “HSCT México.” HSCT México, www.hsctmexico.com/. (Ruiz1)