Reading the "search words" used to find this site break my heart and fuel my fire. Reading things like "worst possible scenario for babies with hypotonia" and "how SMA babies die” not only take me back to my searches just over the past year. . But also give me the drive to shout until the world hears. . SMA...SMA ... SMA.
Seeing the searches also reminds me of precious time lost to a future that I could not control. My advice for those who are surviving with SMA. LOVE all that you can today, LIVE every minute, embrace the life that is with you now. We will be here when they are no longer. Every day - the worst day - with SMA is much better the best day without it.
Reading the "search words" used to find this site break my heart and fuel my fire. Reading things like "worst possible scenario for babies with hypotonia" and "how SMA babies die” not only take me back to my searches just over the past year. . But also give me the drive to shout until the world hears. . SMA...SMA ... SMA.
Seeing the searches also reminds me of precious time lost to a future that I could not control. My advice for those who are surviving with SMA. LOVE all that you can today, LIVE every minute, embrace the life that is with you now. We will be here when they are no longer. Every day - the worst day - with SMA is much better the best day without it.