Help Simon heal from muscular dystrophy

We're asking for support for our son Simon to pay for groundbreaking therapeutic treatments not covered by his health insurance.

To the rest of the world, it appears Simon is relatively fit and healthy, but invisibly he is dealing with a condition that is severely limiting his life. Simon has FSHD: Fascio-scapular-humeral Muscular Dystrophy.

FSHD affects the musculoskeletal structure and function of his left side—affecting his shoulder, arm, neck and jaw. The disease is continually stressing his body, making it hard for his muscles to recover from even mild physical activity and impacting his ability to sleep because of the feeling of constant muscle pulling from which he can never fully relax.

Simon's whole adult life has been marked by this condition, which was diagnosed in high school after he started having trouble extending his left arm in baseball games. Simon was diagnosed by a neurological specialist at the University of Minnesota, who advised him to resign himself to limited functionality, chronic pain, and muscular degeneration that might eventually impact his ability to walk. We also learned that this genetic disorder was passed through Roberta. 

Since his diagnosis, Simon has done his best to get by coping with his disability, but the disease has impacted his life in extremely painful ways, challenging his mental health and contributing to his struggles with addiction.

Last year, Simon came to a crossroads in his life that forced him to decide whether he was committed to his purpose here or whether he would let himself be destroyed by this disease. He committed himself to sobriety and spent eight months attending treatment and living in a sober house to turn his life around.

Simon has now been sober for sixteen months now and is in a stable living situation with his girlfriend of three years, Shante'. They are growing a life together and with this newfound stability he has his "full-time job" to research modalities of healing that could begin to address his symptoms at the root.

With a lot of help from Shante’, Simon has found a functional medicine clinic with a team of practitioners who offer multi-layered therapy to address the underlying conditions that contribute to his disease. This approach is beginning to ease his pain, reverse the abnormal positions on his left side, and support his neuromuscular health. This therapy also holds promise for stemming the progression of the disease.   

Some of the clinic’s services are covered by his insurance and his disability waiver program. However, certain diagnostic testing that will inform and guide his treatment, as well as some supplemental treatments and therapy are not covered.

So we are asking friends and family to consider donating to a fund to pay for these additional services. Any amount is welcome in this effort to support Simon in getting better. Thank you for all your love and support.

Roberta & Ray Olson