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Laughing at My Nighmare: Living with Spinal Muscular Atrophy

by Haider Rizvi

Living life to the fullest despite his disability

My name is Shane Burcaw. I’m 26 years old, a Spinal muscular atrophy patient who never gave up on life.  SMA is a neuromuscular disease that causes my muscles to weaken and waste away over time, but my family and my beautiful girlfriend Hannah have always supported me.  

Very few can understand what it means to spend your life in a wheelchair. In fact, I have been in a wheelchair since I was 2 years old, never putting my feet on the ground like normal kids.  I am completely dependent on others for all my physical needs. However, this hasn’t stopped me from laughing, enjoying life, and loving all the people that care about me.

People with SMA do not have a normal lifespan, a fact that motivated me to become an outspoken advocate for people with disabilities and inspired me to share my story through blogs and books, using humor and an irreverent attitude that most people don't associate with having a disability. I also was not afraid to share the more negative aspects of my disability which offended some people in the disability community. 

Then my life was changed. A first-ever treatment called Spinraza was approved by the FDA, a treatment that was aimed at stopping the progression of my muscle wasting. 

Participating in the clinical trial turned out to cost more than $1 million. The initial cost of the drug trial was $750,000 in the first year and $375,000 or more in the years to follow. Luckily, my insurance agreed to pay the amount and, and $375,000 per year after that.  Now, I can breathe, eat, and move more independently.



Presently, I’m running a support program in a joint venture to help people and communities affected by coronavirus pandemic. As well as his non-profit, Shane has written three books, one of which is named after his non-profit, "Laughing at My Nightmare." He and Hannah also host a YouTube channel called Squirmy and Grubs.

Today, I am not so worried about trying to appear "normal" but instead embrace my disability and work at trying to get others to change how they see and react to people with disabilities. People meeting us for the first time often assume that Hannah is my nurse, not believing that a healthy able-bodied woman would ever choose to have a "real" relationship with a disabled person. But it doesn't take long for them to see that yes, we really are in love and we are making it work.



     

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Treatments and clinical trials mentioned in this story may not be appropriate or available for all trial participants. Outcomes from treatments and clinical trials may vary from person to person. Consult with your doctor as to whether a clinical trial is a suitable option for your condition.