About this fundraiser

For most of my life, I was the one people counted on.


 

I'm a wife, the proud mom of an amazing 13-year-old daughter, and a Registered Nurse. Caring for others has always been part of who I am. I never imagined that, at just 38 years old, I would go from helping patients through some of the hardest days of their lives to needing help just to get through my own.


 

Just a few months ago, I was working, driving, taking care of my family, and living a normal life.


 

Today, my 13-year-old daughter often steadies me as I walk through our home because I'm afraid of falling.


 

No child should have to become one of her mother's caregivers.


 

At the beginning of this year, my health changed almost overnight. It started with symptoms that didn't seem connected, but they kept coming and kept getting worse. First I had to stop working. Then I had to stop driving. Now my mobility is severely limited, and many days simply standing or walking is exhausting.


 

As a nurse, I know my body well. I knew something was terribly wrong. But despite countless appointments, specialists, tests, scans, and research, finding answers has been incredibly difficult.


 

Doctors have diagnosed me with severe dysautonomia/POTS, hypermobility, and chronic pain. My body struggles to regulate basic functions that most people never think about. My heart rate and blood pressure can change dramatically just from standing up. My joints partially dislocate multiple times a day. I live with constant dizziness, weakness, exhaustion, nerve pain, stomach pain, blurry vision, cognitive impairment, hearing changes, and symptoms that affect nearly every part of my body.


 

Eating has become so difficult that I lost 35 pounds in only four months. I am now malnourished and quickly approaching the point where I may require medical nutrition.


 

Then doctors discovered something even more unexpected.


 

Genetic testing revealed a mutation called MED12 that has never been documented in someone with symptoms like mine. Because there isn't enough medical research, it has been labeled a "variant of unknown significance," meaning doctors can't yet say whether it's responsible for my illness.
Many of my symptoms closely resemble several extremely rare genetic syndromes that are typically seen only in males. More recently, we also learned that my sister carries two additional rare genetic conditions that overlap with many of my symptoms. Every answer seems to uncover more questions.


 

Unfortunately, my routine lab work and imaging continue to appear "normal," even though my body clearly is not. It has been heartbreaking to know something is seriously wrong while traditional testing doesn't provide the answers we desperately need.


 

My doctors believe the next step is evaluation at Mayo Clinic, one of the few places equipped to investigate complex cases like mine. They want me there for approximately seven days of advanced testing, including specialized genetic analysis and evaluations that simply aren't available where I live.


 

We are trying to raise the funds to make that possible.


 

Like so many families facing a medical crisis, we've exhausted nearly every financial option available to us. We've spent thousands of dollars on appointments, testing, travel, treatments, and trying to train our dog to become a service dog that could help me with balance, mobility, stability, pain relief, and safety.


 

My husband has been working nearly 80 hours every week just to keep food on the table, pay our household bills, cover mounting medical expenses, and keep us moving forward. I honestly don't know how he continues to carry so much, but he does it because he loves our family.


 

We looked into Medicaid, but our income is only a few dollars above the limit. Social Security Disability has been a long, uncertain process, and while we wait, the bills continue to grow.


 

The hardest part isn't the financial burden.


 

It's watching my daughter lose pieces of her childhood because she's worried about me.


 

It's watching my husband carry the weight of our family while I sit on the sidelines wishing I could help.


 

It's waking up every morning wondering if today will be the day I lose another piece of my independence.


 

Asking for help is one of the hardest things I've ever had to do. Nurses are used to being the helpers, not the ones asking for help. But today, I'm humbly asking because I don't know what else to do.


 

Your donation—no matter the size—will help us get to Mayo Clinic for the testing that could finally provide answers and a treatment plan. It will also help us continue training my service dog, whose assistance could restore some of the independence this illness has taken from me.


 

I also believe this journey is about more than just me. If doctors can learn from my rare genetic mutation, it could one day help someone else avoid the uncertainty, fear, and suffering my family has endured.


 

If you're unable to donate, I completely understand. Sharing my story and keeping my family in your prayers would mean more than you know.


 

Thank you for taking the time to read my story. Thank you for your kindness, your compassion, and for giving my family hope during the most difficult season of our lives.


 

With sincere gratitude,


 

Krista Williams

 

Organized by

Krista Williams

Apollo Beach, FL, USA

Organizer