SHORT STORY

My name is Haley, and like hundreds of thousands of others, I battle Multiple Sclerosis (MS). MS is an incurable, progressive auto-immune disease that relentlessly attacks the nerves' protective layer, causing a wide range of debilitating symptoms. My fight began in the spring of 2005 when I was 28 years old.

Every day, MS tries to steal my mobility, my energy, and my quality of life. I am now seeking a path to halt its progression and regain my independence.

Haley’s Battle: MS manifest in many painful and frustrating ways. Here are a few ways MS affects me daily:

• Mobility Loss & Pain: The Spasticity in my legs is the most visible and painful of my symptoms, leading to an awkward gait and intense lower back and hip pain. I also suffer from Drop Foot, which has worsened lately, and my toes have started curling, making walking unbearable.

• Sensory Issues: Nerve pain often feels like electrical burning in my legs and feet. I also frequently experience the "MS Hug," a strange, painful tightening, squeezing, or burning band around my torso and ribs.

• Vision & Balance: I have endured multiple episodes of optic neuritis (inflammation of the optic nerve) over the years, which have caused vision loss and intense eye pain. My world is also in constant motion due to dizziness and vertigo.

• Chronic Fatigue: Fatigue is a constant bully that I negotiate with daily and is not relieved with rest.

• Neurogenic Bladder: This condition makes it impossible to empty my bladder without self-catheterization and daily medications to manage spasms and recurrent urinary tract infections.

✨ The Treatment: Rebooting My Immune System

As conventional options diminish, my research led me to Hematopoietic Stem Cell Transplantation (HSCT). HSCT is an established, non-radiation chemotherapy medical treatment. The goal is to completely reboot the immune system, stopping it from attacking itself and halting the progression of neurologic autoimmune diseases like MS.

The odds for a sustained quality of life are in my favor: HSCT is 80% effective at stopping the progression of MS and preventing further damage to my body.

My HSCT Journey Details:

I have been accepted for HSCT at Clinica Ruiz in Puebla, Mexico. The process will be long and rigorous:

• Treatment Period: I will be in Mexico for at least 28 days undergoing chemotherapy and the collection and transplant of my own stem cells.

• Recovery: This will be followed by a vulnerable 3-6-month recovery period at home while my body rebuilds its new immune system. During this time, I will need to severely limit my exposure to people as I will be highly susceptible to infection.

I understand HSCT is not a cure, but it offers me the best chance to halt MS and step toward an improved life.

How You Can Help Us Reach Our Goal

The cost of this life-changing treatment is substantial, and we cannot do this alone.

Cost:

HSCT Treatment fee (Including consultations, testing, medical staff, accommodation, meals, and transportation) $57,500

Estimated Goal (Including treatment fee, flights, and associated travel expenses)

$60,000+

The $57,500 treatment fee includes:

• Prior consultations and testing.

• A two-bedroom apartment for me and my caregiver (my mom).

• 24/7 medical staff.

• Three meals per day for both of us.

• Transportation to and from the airport.

Two Ways to Support Our Fight:

1. Donate: Any monetary contribution will go directly toward offsetting the expenses of this treatment.

2. Share My Story: Please share this link with your family and friends! Spreading the word is invaluable.

My husband Jon and all of my family are trusting God through every step of this process. From the bottom of my heart, thank you so much for your prayers, support, and contribution toward helping me halt MS and regain my life. I will do my best to keep everyone updated on my progress while undergoing the treatment.

With eternal gratitude,

Haley

If you're still reading, here is my long story:

My fight with MS began in the spring of 2005 when I was 28 years old. At the time, I was a college student studying to be a nurse, balancing clinical rotations and working as a nursing assistant. I was fully immersed in a busy yet deeply fulfilling life and felt confident about the future ahead. Everything changed one morning, I woke up and I couldn’t see out of my right eye. After undergoing a battery of vision tests, I left the eye doctor’s office with orders for a brain MRI to rule out Multiple Sclerosis. Sitting alone in my car, I cried as I tried to process what this could mean. The piece of paper in my hands felt impossibly heavy—each tear that fell seemed to be another dream I held dear slipping away. I was terrified of losing my ability to care for patients, to graduate from my nursing program, and to build the life I had worked so hard for. I worried about the possibility of losing my independence and even the chance to start a family. The uncertainty was overwhelming. In an instant, the vibrant world I had built began to unravel, leaving me grasping for answers and hope

Over the next 20 years, I will experience many flares or exacerbations of symptoms and many medications. Multiple Sclerosis can cause a very wide range of symptoms, and it presents in different ways for everyone. Here are some of the ways MS has affected me…

I have experienced several bouts of optic neuritis throughout the years. Optic neuritis is an inflammation of the optic nerve, often linked to autoimmune conditions like Multiple Sclerosis. These episodes have led to vision loss and intense eye pain.

Over the next several years, my world gradually grew smaller and more unpredictable as MS continued its relentless progression. By my early thirties, I began to lose the ability to do the activities I once cherished—dancing, skiing down snowy slopes, roller skating, long day hikes to clear my head all slowly became impossible. The loss was more than physical; it felt like little pieces of my identity slipping away. Eventually, I could no longer walk my kids three blocks to school; each step felt heavier than the last, my legs refusing to cooperate. My feet, once my foundation, now felt like cinderblocks strapped to my body. Walking became exhausting and painful.

Even though I didn’t realize it at the time in high school, subtle signs of MS may have been present. Whenever I participated in sports, my feet would inexplicably fall asleep numbness spreading from my toes upward, making every movement feel awkward and disconnected. My coaches would insist my shoes were tied too tight. Out of spite, I practiced with my shoes off, only to experience the same strange sensations. Their confusion mirrored my own, and I often felt isolated by symptoms no one could explain.

I went through several years without health insurance. During these gaps, my MS was left untreated and untamed, free to attack my central nervous system as it pleased. The disease left lesions—dead spots—scattered throughout my brain and spinal cord. The inconsistency in proper treatment during these periods contributed to my MS progressing from Relapsing Remitting MS (RRMS) to Primary Progressive MS (PPMS).

I have been on many Disease Modifying Treatments (DMT) From daily self-injections to biannual IV infusions only to be plagued with side effects that led to more medications to treat those side effects. At present, I take 15 different medications multiple times a day just to barely function.

One of the most significant flares happened out of nowhere in 2018. I hadn’t been feeling well due to a bladder infection which had become all too familiar in my life with MS. It was a typical mundane day running errands. My last stop before going home was to pick up my two children – then just nine and seven years old - I opened the door to enter the building and suddenly everything went black. When I regained consciousness in the ambulance, fear gripped me as I realized I couldn’t move or speak properly. My tongue felt swollen and numb and I couldn’t feel my legs. Looking at the EMT’s for an explanation, I was told that I had collapsed.

My hospital stay lasted a grueling six weeks. The initial two weeks passed in a haze, dominated by an unending stream of tests—MRI scans, CT scans, EEGs—and demanding sessions of physical therapy. With every new test, my anxiety escalated, and I found myself gripped by a growing fear that this might become my new normal. The possibility of never returning to my previous life weighed heavily on me. I worried about how I would care for my children and myself. Was I destined to spend the rest of my life relying on others for help? I was in a new relationship-just about a year- with an amazing man who cherished both me and my children, and we felt the same way about him. Faced with my new reality, I was convinced our relationship would not survive. Why would anyone willingly remain in the midst of such chaos and difficulty? Yet, Jon surprised me. Not only did he stick around, but he leaned in with unwavering support. He helped me shower, assisted me in the bathroom, helped me get dressed, and always managed to make me smile and feel special no matter how tough things became.

For the remaining four weeks, I was transferred to an in-patient rehabilitation center. There I underwent an intense daily regimen of physical therapy, gradually relearning how to stand on my own and eventually walk again, speech therapy and occupational therapy to help me navigate my world from a wheelchair and later with a walker. During this period, I even learned how to drive a car that had been specially modified to be driven using only my hands. I would end up leaving the rehabilitation center better than I went in, but I never went back to my baseline before this exacerbation.

The moments of uncertainty taught me to cope with ambiguity and build a quiet resilience that would become crucial in the years ahead. The vulnerability and confusion shaped my perspective on life and relationships, fostering empathy and a deeper appreciation for the small things that many of us take for granted. No one grows up imagining their body will turn into a full-time job, an enigma, or an enemy they must negotiate with every single day. Chronic illness has a way of rearranging everything without asking permission. I morn the person I used to be while fighting to love the person I’m becoming.

I’ve been living with MS for twenty years now and as I face fewer treatment options and growing uncertainty about my future, I felt compelled to seek out alternatives that could offer hope and a chance at slowing the relentless progression of my disability. This research led me to discover Hematopoietic Stem Cell Transplantation (HSCT), an established non-radiation chemotherapy medical treatment that has been shown to halt the progression of neurologic autoimmune diseases such as multiple sclerosis. The goal of HSCT is to reboot the immune system, stopping it from attacking itself and providing a renewed sense of hope when so many other treatments have failed.

Jon asked me to be his wife last year. Yes, the same Jon that leaned-in seven years ago. We were married this past August in a magical setting made possible and created by family and friends. The love was electric. I was happy, finally truly happy. I knew then that I needed to continue to fight this monster. It was my turn to lean-in and get ready for battle. Negotiation time is over.