How Sickle Cell has impacted our lives

Hi, my name is Kyshawna, I am here as a single mother to raise funds to assist my daughter Samaria and I through a tough time. Samaria is 15 years old and was born with Sickle Cell Anemia. Overall Samaria’s health wasn’t affected as often as some of her counterparts even though she has what is said to be the “worse” type, type SS. When she was 5, the doctors accidentally found out she had AVN (Avascular Necrosis) in both her hips by way of an Xray of her stomach during one of her hospitalizations and stated she’d eventually need a full hip replacement. AVN is caused by the bone not receiving enough blood and oxygen which then causes the bone to die. The AVN didn’t cause Samaria too many problems initially, but she has been very limited in things she could do.

As of December 2022, she has been hospitalized multiple times a month up to her most recent hospitalization on March 29th in which she was discharged on April 3rd. Her birthday is coming up on April 8th and she didn’t want to spend it confined to a hospital bed. She has experienced consistent pain in her hips to the point of being unable to walk at times. She went from walking short distances, riding her bike, going swimming, and going to school to now having to be in a wheelchair almost every day. She had a core decompression surgery in an attempt to help the AVN heal, which was unsuccessful. We are currently trying to get her a total joint replacement but are having difficulties due to the high amount of IV pain medications she needs to control her pain amongst a few other things within the hospital. My baby went from being on 1 pain medication to 14 different medications in a matter of months. And none of them have helped control or relieve the pain she’s experiencing. Over time her pain has now moved to other areas including her knees, ankles and full back.

This situation has not only affected her physically, but her mental health has decreased tremendously. She went from being a happy social butterfly to being sad, stressed and depressed. She’s unable to be in school in a traditional sense, where she can have friends and do the things teenagers do. She’s instead homeschooled. She feels alone because most kids don’t understand what she’s experiencing. And it’s hard to make and keep friends being online and you not being able to actually go out and interact with them. She has older siblings that are no longer home so it’s just me and her and our pup Bonnie we adopted for emotional support.

With all that we are experiencing, the financial strain on me is making matters worse. I am a full-time mom and I have a full-time job. But with the cost of running a household and taking care of a child with a serious medical condition can be extremely costly. I have been trying my best to work and handle all that is going on, but I am barely holding us above water. I’m constantly having to leave work early or miss days for the many doctors’ appointments and hospital stays. The bills are increasing whereas the income not so much. I’m grateful that I have insurance through my job, but they only cover 80% of the costs and the rest is up to me. We can’t get Medicaid due to my income and I can’t afford to pay for secondary insurance. I’m not here to get rich, I just need some help to prevent me and my daughter from drowning in bills and possible homelessness due to co-pays, medication changes and hospitalizations. She currently has over 180k in medical claims pending. And so far there is no ending in sight with this crisis she’s experiencing. Funds will be used towards all medical and living expenses during hospital stays and possible future surgeries.

We are grateful for any assistance anyone can afford to give. I know it’s tough times for many around the country and I pray we all can find relief somewhere.