Living with SMA and managing the aftercare of cancer remission is a delicate balancing act. Every day, I am reminded that healing is not linear, and life with a significant disability requires ongoing care, adaptability, and strength. While I’m no stranger to navigating life as a disabled woman, the addition of cancer survivorship has introduced new complexities and challenges into my daily routine.

Treatment was challenging and tiring. I endured 27 rounds of chemotherapy and radiation every day at the hospital. It was also recommended that I have six rounds of IV chemotherapy starting in January 2024. I had a port placed, completed my first round and, unfortunately, it took a drastic toll on my body. I couldn’t eat for nine days, it was difficult for me to stay hydrated, I could barely hold my head up or drive my wheelchair, I even had an adverse reaction to medication that caused exacerbation of my facial muscles. I made the decision to stop chemotherapy treatments and focus on living the best life possible, without being a shell of myself.

I am thrilled to share that my cancer is officially in remission! This milestone is a testament to the resilience of the human spirit and the incredible support of my medical team, family, and friends. However, while this chapter brings immense relief and gratitude, the journey doesn’t stop here.

At the same time, SMA continues to shape my daily experiences. From navigating accessibility barriers to managing the complexities of my care, I approach life with the same determination that got me through cancer twice.

I’m reaching out to you for help. There are many expenses related to my cancer care, that now more than ever, insurance will not cover. All of my disability and cancer related equipment continue to be crucial for my health and survival. Not only will your support help me, but it will minimize some of the stressors impacting Ben and help his physical and mental well-being.

How can you help?

Your generosity has already made an incredible impact on my journey, and I’m endlessly grateful for the support I’ve received. Thanks to your contributions, I’ve been able to cover many immediate medical expenses and focus on my health. However, as I continue to navigate the aftercare process and the daily challenges of SMA, I am raising additional funds to ensure my ongoing care and quality of life. We are having to pay more out-of-pocket than ever before for my aftercare and assistive devices.

To address these needs, I have increased my fundraising goal on GoFundMe. These funds will help cover costs such as:

• Routine follow-up scans and medical appointments
• Transportation. Our van is 14 years old, has over 174,000 miles, and needs constant repairs
• House cleaning and sanitizing
• Medical massage therapy for neuropathy caused by chemo
• Supplemental caregiving (respite for Ben)
• Consumable medical supplies and durable medical equipment
• Medical expenses ie. bills, co-pays, etc.

Your support continues to make a tremendous difference in my journey to overcome these challenges. With your help, I can focus on continuing to heal and continue my work in spreading awareness about disabilities and cancer survival, and living a life filled with hope and love.

Thank you for considering our request, for being a part of our journey and community.

Warm regards and hearts full of gratitude,

Liz & Ben