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.
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.
ReplyDeleteHappy 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.
ReplyDeleteDear 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
ReplyDeleteOh 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.
ReplyDeleteRita, 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...
ReplyDeleteRita, 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.
ReplyDeleteThanks 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.
ReplyDeleteSo 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.
ReplyDeleteOh 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.
ReplyDeleteHi 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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