We are honored to share the secondeBook in our “All the Difference” series, where extraordinary individuals share their experiences living with rare and complex conditions. This eBook focuses on siblings Sienna and Wesley, two of our patients living with Spinal Muscular Atrophy (SMA).
Spinal muscular atrophy (SMA) is a genetic disease that affects the central nervous system, peripheral nervous system, and voluntary muscle movement, also known as skeletal muscle. The cause of spinal muscular atrophy is due to a missing gene that encodes the survival motor neuron (SMN) protein, which is critical to the health and survival of the nerve cells in the spinal cord responsible for muscle contraction (motor neurons).
This eBook highlights Sienna and Wesley’s different stories living with SMA. You will learn more about what Spinal Muscular Atrophy is, and the causes of the disorder. In addition, you’ll read about Sienna and Wesley’s journeys with SMA and how, with treatment and a supportive community, they can now take part in life’s simple joys. Finally, we’ll also share how Orsini can provide support and specialty medications to SMA patients and their families.
“I want to make sure that everybody knows that there is hope and to not give up on your kids.” – Shayn, Sienna and Wesley’s father
Click here to download your digital copy of the All the Difference eBook.
We hope you enjoy reading Sienna and Wesley’s stories. If you have any questions or want to speak with a member of our team, simply click here and we will be in touch.