Tuesday, August 2, 2011

Taking a break today...

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.


  1. I won't begin to tell you I understand how you feel today. I pray that your day reminds you of the special time with him, no matter how short. And thanks for sharing the info. I really had not heard of this so you educated me. Be blessed.

  2. Happy Birthday Eli! Add one more person educated by the tragic death of your beautiful baby. I hope that you can keep one educating people about this disease so one day no more children have to be affected. Thanks for sharing.

  3. Dear Rita, I have a friend of a friend whos child has just passed away from "SMA" it is heartbreaking. My heart goes out to you and your family and I know our Heavenly Father is with your son:) Just wanted you to know that the community I live in is aware of "SMA" because of little Sydney Potjer (her mom has kept a journal on The Caringbridge website) and we are raising funds to help for research on this terrible disease. God bless you and your family. Sincerely Lori Bloomer

  4. Oh Rita, I had no idea. I can't begin to know your pain but I can let you know that my heart goes out to you and that I am thinking of you today.

  5. Rita, I am sorry for your loss. Thank you for educating us about this tragic disease. And know that you are in my thoughts and prayers...

  6. Rita, I can't even imagine the pain in your heart for your loss. My thoughts and prayers are with you and your family. Thank you for sharing your story with us, as I had never heard of SMA prior to today. Hugs my cyber friend.

  7. Thanks for telling us about your precious son, and about SMA. I will pray for you as you go through this sad time without your little guy.

  8. So sorry for the loss of your little fella, I could not imagine what you went through. Thank you for educating me on this disease. I am sorry you had to find out about it the hard way.

  9. Oh Rita what a sweet little guy! I had no idea - I can't even begin to imagine how hard it has been for you. You are in my thoughts.

  10. Hi Rita, I just found your blog today and wanted to say how sorry I am for your loss. I have two friends who have children with MD, and one of those has SMA. I think you're all so amazing to be given these angels from heaven, even if only for a short time.


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