The one lovingly called Sweet Baby Zane.
Maybe this story keeps tugging on my heart because this is a story about twins.
Or maybe it's because I know oh-so-well that feeling of being overjoyed about having twins and the heartbreak when something goes amiss with one of them.
Maybe it's because Sweet Baby Zane looks a lot like another sweet little baby I know.
Or maybe it's all of these things, or something deeper that I can't or won't see. It doesn't matter. All that matters is that this story has affected me in a way that's much, much different than others.
Zane Suzanne Schmid, the beautiful little angel pictured above, was diagnosed this past February, when she was only six weeks old, with a condition called Spinal Muscular Atrophy (SMA) Type I.
She died on June 18. She wasn't even six months old.
No parent should have to select a headstone for their child at six months old. That's just not right, and there are no reasons for the not happily-ever-after storybook ending for this little princess. This sort of thing should not happen.
But according to the stunning information on the website created in Zane's memory to raise awareness of SMA, it happens more often than one could ever imagine. SMA is the leading genetic killer of infants. It is a terminal, genetic disease that results in the loss of nerves in the spinal cord and the weakness of the muscles connected with those nerves. SMA impacts the ability to walk, stand, sit, eat, breathe and even swallow. The mind and spirit are no different from that of a healthy baby, but the body eventually fails. Typically, babies with SMA Type 1 have a life expectancy between one and two years. They require around-the-clock medical assistance and monitoring.
- SMA is the #1 genetic killer of children under the age of 2.
- SMA is estimated to occur in nearly 1 out of every 6,000 births.
- The gene mutation that causes SMA is unknowingly carried by 1 in every 40 people or nearly 8 million Americans.
- There is currently no treatment and no cure, but 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.
- Researchers estimate that we are as close as only a few years away from finding a treatment and/or cure.
- Because scientists know so much about SMA, SMA is considered a “model” disease with direct impact on research into many other diseases potentially benefiting millions of people.
I don't have millions to donate, and I certainly don't have the words for Zane's heartbroken parents and family. But what I do have is a little soapbox here with this blog. Although I don't have a huge readership, I have a handful of people who, like me, may never have heard of SMA.
And may know someone who needs this information.
"He sings out a song which is soft but its clear
As if maybe somebody could hear
Goodnight, you moonlit ladies
Rock-a-bye ... "
Rock-a-bye, sweet baby Zane.