I know my blogging has been a bit sporadic lately, but thanks for hanging in there with me. This time of year is really hard on us. Our son's 3rd birthday is today, but he's not here to celebrate. He was born with a genetic disorder called Spinal Muscular Atrophy and passed away before he turned 6 months old. As August is SMA Awareness Month, I wanted to take a minute to pass along some information on my blog.
This is SMA:
- SMA KILLS more infants and young children than any other inherited disease.
- There is NO treatment. There is NO cure.
- SMA is degenerative, eventually hindering the ability to walk, stand, sit, eat, breathe and even swallow. The mind is no different from that of a healthy baby, but the body eventually fails.
- Typical babies with SMA Type 1 have a life expectancy of between one and two years and require around-the-clock medical assistance and monitoring.
- 1 in every 40 people or nearly 10 million Americans UNKNOWINGLY carry the gene responsible for SMA — few have any known family history of SMA.
- SMA is a pan-ethnic disease and does not discriminate based on race, ethnicity, or gender.
- While SMA is currently incurable, untreatable, and drastically underfunded –> There is HOPE.
- The National Institutes of Health (NIH) and the National Institute of Neurological Disorders and Stroke (NINDS) selected SMA as the disease CLOSEST TO TREATMENT of more than 600 neurological disorders.
- SMA is considered a MODEL DISEASE with direct impact on research into many other diseases, potentially benefiting millions of people.
If you made it this far, thank you.
Happy Birthday, Eli. I miss you. I miss you every single day of my life and I always will.