Amanda Zikas

I am using Help Hope Live as a fundraising platform, but more importantly as a way to inform you about my current fight with MS, and my plans to hopefully stop my fast progression by undergoing an aggressive medical procedure: a stem cell transplant.

I was diagnosed with Multiple Sclerosis in 2009 after I experienced numbness in my left hand. It was a shock, but due to my manageable symptoms, I lived for a decade using MS medications and remained stable. Everything changed around 2019 when I noticed that I became fatigued more easily, and my walking and balance were affected. I noticed that when the weather was sunny and warm, I would experience heavy feeling legs and balance issues where I would fall. Disability progression has been quick, and symptoms that used to occur occasionally are now a daily struggle. Many times my legs feel like concrete blocks and it’s as if my brain can’t remember how to walk. My balance continues to be severely affected and I have trouble walking a straight line- it feels like I’m trying to walk on a 1-inch balance beam with stiletto heels! I have cognitive issues and sometimes I have trouble speaking clearly. All of these symptoms make me want to stay inside and isolate myself from others. Some friends no longer invite me out (thank you to those who keep me in your lives!). I try to live as normally as possible for the sake of my family, and I try to stay positive. It’s hard to attend my kids’ activities, such as watching them participate in sports since fields are usually a far walk. I should use a cane often, but due to my own issues… pride, embarrassment, I just walk the best I can without one. Nick has been my rock through it all and takes the lead with so much, and I can see it is wearing him down. The kids are affected by my disability in so many ways as well.

My neurologist has said that I will be in a wheelchair within a few years. I refuse to accept that this is my future. I spent the last several years researching ways I can get healthy- I exercised, ate well, had physical therapy, but I’m still progressing. I discovered a procedure called aHSCT- Autologous Hematopoietic Stem Cell Transplantation. It’s a type of bone marrow transplant used to reset the immune system, using 4 rounds of chemotherapy. The desired result is that my body won’t recognize that I have MS and won’t attack itself. My symptoms won’t magically disappear, but hopefully my MS progression will stop. It will be a starting point and with intense physical therapy I can make improvements and feel great again. In the USA this procedure is used for cancer, but not widely used for MS. I do not qualify for USA trials due to my age and MS progression. I discovered a well-respected and successful medical clinic in Puebla, Mexico, Clinica Ruiz. They have completed over 1800 aHSCT procedures with a 70-75% success rate. The clinic is and the directors are well respected in the MS community. The procedure doesn’t promise a cure, but an excellent chance of halting it. This is not a scam or experimental procedure. I will be in Mexico from August 31 until September 28. Nick is taking off work to stay with the kids at home, and I will be going by myself and hiring a bilingual nurse to care for me.

This is 100% out of pocket for us, and the total cost is close to six figures. Like most people, we don’t have this kind of money readily available. We are prepared to cash out of our retirement account. However, we are looking for help to relieve the stress of such a huge withdrawal of retirement money and resulting tax burden. We are looking to fundraise a small portion. Not everyone can or wants to donate money- that’s OK. If you can help in other ways in September, or when I return, we would be grateful. I will be in quarantine for many months after I get back to PA due to my immune system. If you’re local, can you help walk our dog Loki, drive Avery to sports practice, help with dinners (or DoorDash)? Your positive thoughts and prayers are needed and appreciated too.

I will have an online blog set up to provide a daily diary of my experiences and will communicate the website before I leave. I’m hoping it will be informative and entertaining, and I’ll even post photos of my bald head!

Thank you for reading about my big plans for September! And yes, I’m scared, but very hopeful. There is no other option but to try this! If you have questions about anything I’ve written, please contact me. at [email protected]. Venmo (since I’ve been asked) is @Amanda_85250. If you want to send me a get well/positive wishes card, my address is 216 Ruby Dr. Collegeville, PA 19426

Thanks for reading this. Much love to all of you!

Family and friends of Amanda Zikas are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with a Catastrophic Illness. Amanda has chosen to fundraise with Help Hope Live in part because donations are tax deductible for contributors and will only be used to cover medical and related expenses. Unlike GoFundMe, the money raised can only be used for my medical expenses. When donating, any amount is appreciated, and you do not have to include a “tip” to cover fees. If a check is sent the memo line must include “In honor of Amanda Zikas”.