Current Situation
Most know that I have been dealing with random neurological issues for several years now. However, up until early this year my symptoms were inconsistent and hard to diagnose. That changed around March timeframe and I was officially given a diagnosis of Multiple Sclerosis. Symptoms and effects of MS are different for everyone, but what is universal is that there is no cure currently, only management of the progression of the disease and attempts to minimize the existing symptoms after diagnosis and treatment begins. My main symptoms include a daily decline in the use of the right side of my body that affects everything from walking to writing. I also find that I am significantly more prone to injury in my current state. Best I can describe it is like partial paralysis of my right size as the day goes on, with it resetting back to about 90% after I wake up each day.
The current treatment I am on is a drug called Kesimpta, but this treatment only serves to stop the progression of the disease, it does nothing to address the current stage and symptoms. What is most frustrating is that it appears that prescribing you this treatment and advising you to learn how to live with current symptoms is the best our medical profession in the U.S. has to offer. I have asked on many occasions about treating the symptoms, medical studies, trials, etc. for my condition and it is as if it falls on deaf ears. However, that doesn't mean there aren't options. Naturally, someone with a desire to improve their situation will do their own research and seek to find other means that things can be improved. As such, I have found 2 treatment options, that when combined, show tremendous benefit to someone with MS and getting them back to as close of pre-symptom state as possible. The first of these treatments is a hormone and peptide treatment that I have now been on for a few months. It has tremendously helped with the fatigue factor I was facing, as well as giving me more strength than I had before. However, it doesn't help with the loss of motor movement that I still deal with each day. For these issues, this is where the stem cell treatment I have put together this fundraiser comes in. Neither the hormonal treatment or stem cell therapy is covered by insurance and both carry a healthy cost.
Stem Cell Therapy
Stem cells are a body's “raw materials” from which all other cell creation comes from. This science has been around for some time and is offered to treat many areas across the globe. There are 2 types of stem cells used, one kind can be harvested from the same individual they are intended to be used for, and the other comes from umbilical cord blood harvested shortly after child birth. The first type is commonly used and approved for use within the United States. However, the cord blood type is not approved for treatment use within the U.S…only for study and testing. My condition requires a stem cell from cord blood, as it needs to be known to be clear of the existing disease or issue I am facing. We banked both Bailey and Caylee's cord blood and have been cryogenically storing it for such situations as these. However, we are unable to use our own banked cord blood as countries that allow the use of cord blood stem cells, require it come from domestic sources and with the U.S. not approving such treatments at the moment, we are unable donate it to a treatment facility abroad for such purposes. This just means we must rely on domestically harvested stem cells from the country we elect the service. Those facilities get their stem cells from donations by mothers in that country, which are highly tested, and only accepted, from a very select criteria of donors. I tell you all of this just to illustrate that this is not brand new science or is it something that is immoral/risky in nature. The company that I have ultimately settled on is GeoStar in Mexico. They have 3 facilities throughout the country and have been doing this stem cell study and therapy for a very long time. I have absolute confidence that the integrity and quality of their treatments is second to none. As far as the treatment all together, the testimonials and benefits witnessed from this therapy by those with MS has been impressive and inspiring to say the least. While I know such a treatment isn't the end all, cure all, it certainly looks to offer the improvement I am looking for and need.
Furthermore, after this initial treatment, follow up treatments for maintenance are often necessary, but are considerably less in requirements and cost. I am confident that those costs would be sustainable should they be necessary, and that such a fundraising need in the future would not be necessary.
Financial Position
The cost for this treatment is around $25,000 with travel and lodging. While Lithia and I are financially stable at the moment, we certainly have had to make some adjustments this year in response to this situation, as well as the overall decline in our business and investments. Our auto detailing business has been closed all together after COVID hit the auto industry and we went from around 20 employees across 2 dealerships, to a single employee at our retail location, which we ultimately shut down due to it simply not being cost effective and we still carry debts we are paying for this business. The billiard business has also been reduced from 3 full-time crews to just one which now generates just enough revenue to pay staff and keep the lights on. Lithia has taken a full-time position and I have been fortunate enough to have picked up a full-time contract with a crypto company that allows me to work from home as their Global Event Strategist. However, this position does require travel during the year as I have to attend the trade shows that I set up; which is a physically tasking endeavor when attended. My ultimate fear is that if I don't get in better physical condition to perform at these trade show events, I run the risk of losing this work, and that would tremendously change our financial position. Furthermore, due to the nature of this being a medical investment, our prior self employed status, and declining business history…we unfortunately do not qualify for financing. It is the timing of all these factors that makes this such a season that any sort of fundraising request is being considered. I have struggled to put this out and make any request for assistance, but I feel it is necessary given all the circumstances in play and to give me the best chance of recovery and preservation of work ability that I have currently. Bancor is fully aware of my diagnosis and have been nothing but supportive. However, I know ultimately they have to consider the value of what I can actually deliver and the crypto space couldn't be more financially competitive than it is now. Which is why I don't want to fall short and I know I will not be anywhere near 100% if things remain as they are now.
Conclusion
In closing, thank you for taking the time to read all of this and consider joining me on this journey. To be clear, I know this isn't a life saving level of treatment that so many others in the world looking to raise money may need, nor is it one that I couldn't eventually be able to pay for myself. I don't want to give anyone the impression that we are “down and out”, as this is not the case. But it is a situation that I feel has a sense of urgency and will help serve as a catalyst for healing and hopefully establish a stronger physical foundation that I can build upon, preserve my ability to provide for my family, as well as be in a position to pay it forward to others in such need in the future. Please know that nothing is expected and I am fully aware that everyone reading this has their own financial needs to consider. Any and all support is so appreciated, even if just through prayer. :-)
The goal is to have things in order for a mid-February treatment, anything contributed here helps me do that. Thank you so much for taking the time to consider this and feel free to contact me directly if you have any questions or need any additional clarity.
