Empower Dana Neal's Fight for a Better Life

My sweet sister-in-law, Dana Neal has an amazing story to tell of Faith, courage, persistence, and love for her family. She has a request for help with her medical needs. Dana has recently battled kidney cancer and is recovering from surgery to remove one of her kidneys. Dana also has a rare disease called Fredrick Ataxia. She was diagnosed with FA at the young age of 19 years old.

Friedreich ataxia (FA) is a rare, inherited disorder that causes progressive damage to the nervous system. Symptoms typically begin between the ages of five and 15, although they sometimes appear after age 25. Symptoms of FA may include:

• Awkward, unsteady movements and impaired muscle coordination (ataxia) that worsens over time

• Difficulty walking and poor balance

• Impaired sensory functions, such as loss of sensation in the arms and legs, which may spread to the trunk and other parts of the body

• Loss of normal reflexes, especially in the knees and ankles

• Slowness and slurring of speech (dysarthria)

• Increased muscle tone (spasticity)

• Curving of the spine to one side (scoliosis)

• Difficulty swallowing

• Hearing and vision loss

• Fatigue

FA also may cause heart disease, specifically cardiomyopathy (a disease of cardiac muscle that may lead to heart failure or heart rhythm irregularities), and diabetes.

Progression of FA varies from person to person. Generally, within 10 to 20 years after the appearance of the first symptoms, individuals with FA may need to use a wheelchair. In later stages of the disorder, people may become completely incapacitated.

Dana would love the following items to help with her recovery as well as medical wants, needs, and wishes that will help her and her family:

Many of these items are extremely costly and not covered by her insurance. She would love to get the PureWick™ System for use at home. The system itself is quite expensive and there are monthly replacement parts including catheters and canisters that are required as well. This will help Dana as she is wheelchair bound and is not able to transfer on her own. She spends most of her days in her wheelchair. She would love to get a Power Reclining Chair that is fitted for her so that she doesn’t have to spend all day in her wheelchair. She was able to get a power wheelchair in the past but hasn’t been able to get a manual wheelchair for over 10 years. She would like an updated manual wheelchair to fit her body. She loves her power wheelchair, but it is much easier using a lightweight manual wheelchair for some places they go. Lastly…this is a big wish, but she would be so happy to be able to purchase a wheelchair accessible van. This would allow her to be able to visit family in North Carolina and be able to do things that we take for granted like simply going to the mall with her daughter, Lil.

I asked Dana to tell you the story of her life. It is certainly a story of Faith, Love, Perseverance, and Courage.

Jim and I met 23yrs ago from an internet dating website, and it was instant love! Yes, my disability was there but it was never an issue! It has always been us, Jim & Dana! We can conquer the world together. Life goes on, NO kids were in our thoughts till we talked and agreed we could do this; we will figure it out! In 2006 our daughter, Liliana was born! Yes, there were complications, but We’ve Got This! We had a great life as a family of three, and yes tough times, but We’ve Got This!!! In 2014 our son, Josiah, enters. Life of four has its challenges, but We’ve got this!

In 2015, after several years of living in NC, we missed our families in NY, so we made the move back to New York. I have always been strong and never wanting pity! I still don’t but damn this Friedreich ataxia is hard but it could be so much worse! Jim is my rock, and he pushes me (literally) to never give up! He hates seeing me struggle and wishes he could stop the pain. He is a fixer.

I have always been told that God always watches over me, past & present. He always takes care of me whether it is financial, marriage struggles, health, and life in general; He gave me what I could handle, and he helps me with all I do!

Here is a background of how I was diagnosed with Friedreich Ataxia:

As a kid I was always clumsy and could never walk in straight line, no biggie, I’ve got this! My neurological testing began at age 12, but so much going on and I was mis-diagnosed, but at least we got some incite. I am a kid, I’ve GOT THIS! Life goes on. During my senior year, there were more issues with walking. I had many sprained ankles, and we were wondering what is going on? But I was also 17, and it was my senior year and despite so much going on with me neurologically, I was determined to fly. I received 2 college degrees: one in AA travel and tourism at FLCC BS and one in business management at Suny Fredonia. College life is a big blur. Friends helped me get through it! At this age, I got my first of many AFO's (ankle-foot orthosis) and learned two walk w crutches. By age 19, my family and I finally got my true diagnosis of FA (Friedreich ataxia) and I began to live in the moment. Friedreich ataxia is bad, but I’VE GOT THIS! The diagnosis hit my dad hardest, my mom was strong and knew that I’VE GOT THIS FA crap! When I was 21, I got my first wheelchair just to use for long trips.

Writing this has been good and bad because it has brought me back to the past. But I am living for now and life continues.

Between the ages of 21 to 28, I moved back home and learned to drive with hand controls, obtained my own car with a wheelchair topper, and was able to work here and there. I slowly used the wheelchair more and it became safer and easier getting around. During that time, I took many day trips visiting the best neurological doctors located at Strong Memorial Hospital in Rochester.

I moved into my own apartment and got a puppy named Oliver when I was around 26. In 2000, I met Jim Neal, and our love was instant. Jim and his family welcomed me, and we got married when I was 28 years old. We had a big, beautiful wedding! Not long after we were married, we said goodbye to New York and Hello to North Carolina!

I found myself loving being a wife! I was able to manage my transfers successfully. The AFO’s and surgery made it easier for me to transfer on my own. Jim worked very long hours, and I hated it, but understood.

Like many Friedreich ataxia patients, I found myself with type one diabetes, so no more sweet tea for me!

I never thought I would be able to handle having kids, but we did it! I pride myself on that! I was a happy, strong, stay at home mom! Jim worked and we made it work! I had doctor appointments to make sure my body was able to have kids, specifically my heart and my lungs. Liliana was born in 2006. She came early due to preeclampsia, and I had to have a blood transfusion, but GOD IS GOOD! We had a special crib and changing table made by that amish so that I could have access to her. I learned to adjust for her. She is the best. Even now at 19 years old, I am so proud.

We had an unexpected pregnancy after Liliana was born. We were shocked and happy, but sadly I had a miscarriage.

We decided again after the doctors gave the okay and Josiah was born. I struggled with transferring, but I’VE GOT THIS!

When we moved back to New York to be close to family and friends, we had a difficult time trying to find a home that was accessible. Our family of four lived with my folks. Jim had to work, and this was such a hard time. I was reliant on others and depression started. I lost so much of my ability then. If you don’t use it, you lose it. Liliana was in 1st grade and Josiah was almost 2 years old. We had to live with my parents, and I felt like I was not a mom anymore. I lost a lot of CONTROL!

It took forever, but we finally found a home. We had to do a lot of work to make it accessible, but during the time we were trying to find a place, I had lost too much of my ability and needed more care. This time was very hard, but I’VE GOT THIS! Jim had to give up working outside the home because I needed so much help. Joe was young. Jim raised him. I did what I could, my lap was always open no matter how big he got. It was a crazy time. We had to adjust. I could no longer cook and do dishes. I enjoy my time with the kids. I started to get at home physical therapy and occupational therapy one time per week.

Jim started selling items on Ebay and is thriving. In 2020, we moved to our forever home in Randolph, New York. We were able to make that home accessible for me and the kids were growing and thriving. Jim was happy to be back to his hometown and was building his business of selling items on Ebay and working as a bus driver. In 2022 I was diagnosed with Type 2 Diabetes. And in 2024 I became very ill and had sepsis. During that hospital stay, they discovered I had kidney cancer. My lungs became an issue, but I fought and wone. I’VE GOT THIS!

In February of 2025 I had my kidney removed and am now cancer free! I will admit that I questioned God. “Why me?” But he had my back, and he is GREAT!

I am now dealing with hearing loss, and it is hard to follow along in conversations. My speech has declined, so that is also difficult to communicate. But I’VE GOT THIS! My hand strength has declined as well and I have such a hard time doing easy tasks like feeding myself, brushing my hair, and putting on make-up. It’s hard, but I’VE GOT THIS! I am slow in thinking and talking, but I am figuring it out. I need patience from family to be able to communicate.

I am hoping that Go Fund Me will improve my life. I know that times are tough for everyone, but any help is appreciated.

1. If I was able to get the Purwick System, I wouldn’t have to worry about having an accident. Jim is happy to help me, but I am not as light as I look. If I had the Purwick System, Jim would not have to take me to the bathroom as frequently and would be able to go to work and not have to worry if I had an accident. I would be able to be more comfortable.

2. It would be nice to have a power recliner. I am a big TV junky POWER RECLINER - i am big tv junky. I spend 99% of the time in a chair. The one I have now is over 10 years old. When I sit there, I do crafting, watch TV, eat meals, family time, laptop time. I could do all those things in comfort and style.

3. I would also love to have New lightweight manual wheelchair. I sit all day so I would love to be comfortable. My insurance won’t cover since I got a power wheelchair. My manual wheelchair now is old, dirty and 10+ years. A manual chair is easier to get in and out of our parents’ home when visiting as well as church and any non-accessible places Jim pushes me.

4. A wheelchair van would bring wonders to me and my family. It would be so much easier to go places! I want to be able to get out, but I know it is not easy! I would love to go shopping with my daughter, Lil and visit family in North Carolina. With a wheelchair van, anyone could take me out! This van would be so helpful and life changing for me.

I am turning 50 years old this year. I have battled a disease with no cure since I was a teenager and now, I have beaten cancer. I am ready to experience life to the fullest and enjoy my family and friends.

Thank you all for your prayers and generosity, they are appreciated.