Stephanie’s Battle to End Sickle Cell Disease

My name is Stephanie, and I have a genetic blood disease known as Sickle Cell Anemia. Generally, those with Sickle Cell Disease are often hospitalized for days to weeks at a time, due to the disease’s acute painful episodes known as “pain crises”. These episodes can affect almost all of your body and its’ primary functions: your heart and lungs; your liver and kidneys; your bone density and it can even cause strokes. Sadly, due to the nature of this disease, those with Sickle Cell have a life expectancy of fifty years or less.

At the age of seventeen, I was diagnosed with this painful and debilitating disease. In my short lifetime, I have suffered from blood clots in my lungs, had my gallbladder removed, a shoulder replacement, and a hysterectomy, all as part of my ongoing battle with this disease. While my husband Matt and I, are blessed to have two beautiful girls, Aria and Elana, my pregnancies were considered “high risk” and I had to be monitored for blood clots and developing early preeclampsia. It has been a long and tiresome battle for the better part of my life. The last two years of which have kept me in and out of hospital every six to eight weeks for days at a time. All of which have taken its toll on my family and I.

In September 2024, I was fortunate enough to have been matched with a bone marrow donor. I will be undergoing a bone marrow stem cell transplant in early April of 2025. The treatment’s goal is to eliminate the cells that cause the symptoms associated with the disease, because at this time, there is no “cure” for those with Sickle Cell.

While my family is very blessed to have health insurance benefits that will make my medical care somewhat affordable, there will be expenses beyond my hospital stay. Once I return home, due to the fragile nature of my new immune system, I will have several costly medications; will need to carry a stock of medical and cleaning supplies; have our dog groomed frequently; and I will have to follow a specific diet. It is with your thoughtful and generous donations, that my family and I will be able to cover these incurred expenses without burden of excessive debt. Please consider donating to help support my family and I as we enter this difficult time. Thank you.