Skylar Huffstutler

Hi my name is Skylar and when I was younger I was diagnosed with Acute Lymphoblastic Leukemia. Throughout my three years of treatment I receive an extremely large amount of heavy duty steroids along with my chemotherapy. Due to the intensive treatments, I developed avascular necrosis. The holes in my bones started to develop when I was ten but I was not informed of my condition until my twenties when the resulting damage made the disease entirely debilitating. St. Jude diagnosed me with osteonecrosis in many places including my vertebrae, femurs, knees, and tibias. Throughout this journey of figuring out how to make it through, I have found that no doctor has ever seen what I have. Avascular necrosis has never been seen where the giant masses of dead bone are located in my femurs, and they do not understand how it happened. The Mayo Clinic has been working on it but due to the circumstances of the placement they believed that there was nothing that they could do to help me. Every doctor had previously come to the same conclusion, but after a little bit of time Mayo found a surgery that might work.

Since I was not informed of my serious condition I persevered through the pain, making it through my bachelors in forensic chemistry. I then found my dream career at the Wisconsin State Laboratory of Hygiene as a chemist and had never been happier. Due to my medical conditions I had to go on FMLA in August of 2023, and once I received the confirmation that there was nothing more to be done I resigned in February 2024. I am now figuring out the process for my disability and what my next steps are in life. Currently I am bedridden due to the extreme pain and I have not been able to walk since August. I can leave my house in a wheelchair for doctor’s appointments and very limited occasions at a painful price.

The hospital bills have been tens of thousands of dollars and now we will be facing extremely high upcoming medical costs. My husband is currently working three jobs as well as serving in the national guard to keep us afloat. The unexpected tens of thousands gone while I am not making an income or getting disability yet is overwhelming. We are currently unable to afford needed disability aids that could help me have some sort of quality of life at home. Although I have worked so hard to achieve my dreams I wasn’t able to keep them because of my unique condition. There is a lot of uncertainty in my life right now and to have any of the pressure alleviated would help give me a little bit of energy to power through.