Donate to Help a Mom Fight for Her Life

A few years ago my health started doing really poorly again. I have spent three years chasing an answer and I have finally found some. Vanderbilt has done a great job figuring it all out, thankfully, it’s been a long time coming. They have found more which is so scary, but I do believe Vanderbilt can help give me a better life and keep me alive. (A small brain herniation where my brain is protruding above my brain stem and could be causing many issues. I’m also waiting on a bone marrow biopsy due to leukocytosis for years and anemia. Moffit found a bone marrow failure in my genes so we are testing further) A few years ago my children also started exhibiting some symptoms and do have a few health problems already. My grandson is also following and he is 2.

A little backstory to get a good view on the story. I was told years ago now that I had 10 years to live, due to an extreme case of a rare auto immune disease known as Behcets. That soon led to the doctors finding congestive heart failure , rheumatoid arthritis, major allergy issues, seizures and a long list of others. I was also going blind regularly, needing a cane walker or wheel chair to get around when my body wouldn’t cooperate. I was under 30, hopeless in a sort, wondering when my last moment with my kiddos would be. I’ve learned through everything each day is something to be happy for. I wrote my will at 27 and a letter for every occasion of my children’s life and somejust because. I am thankful I have celebrated and tore up so many. In those first 8-9 years I had so many scares. The worst was, I was sitting in the hospital with Ali and they told us my organs were shutting down and there was nothing they could do. Thankfully I was flown to Mayo in MN and they were able to save my life, and give us a better treatment plan for me. I was stable for a while under treatment.

Fast forward 12 years:

I made it! They were wrong!!

I was doing great keeping up financially but now that new treatment has started, the financial has been really adding up as the treatments include 4-6 hour IV’s, as well as regular injections. I can afford to keep traveling until we move, I also can afford my doctors to keep up with this. What I need help with is the start of treatment. One treatment copay for me is $550, for one medication and I am still waiting on the cost of the other. I have already paid for multiple to get started on treatment. Although financially it has been a challenge, we unfortunately have to prioritize my health to continue day to day life. This is the sad reality of having an extreme chronic condition. I also have a few tests I need done but can’t quite afford yet. I have applied for help with treatment cost but that could take a few months to happen. I cannot wait on treatment, due to the fact that I have had a fever for over 4 months. Although I was not quite ready for all of this, I have no other choice. My health is the most important aspect in life, so I can be here as long as possible. With this being said I am finally putting my pride aside to ask for help, after 17+ years of battling this multitude of issues. If you can help, I would be so grateful, even if it’s just some positivity! I live my life for my family and grand-babies, the more time I get with them, the better !

Any and ALL money left over will be going to testing for my children and grandchild.

If you made it here, thank you for taking the time to read about my journey. This is one of the hardest things I have ever wrote to share with all.

If anyone would like to follow my journey, the Facebook page is under Be a Queen. As soon as I get myself settled I will be turning it into a page to help people advocate for themselves in the medical world.