Friday, January 30, 2009

In a world 40 years ago my son probably wouldn’t be here

At one point in time, the average life span for people with Sickle Cell Anemia was twelve years of age. Today, my younger son has hit that milestone – and not without a whole lot of reflection and praise from me.

Thank you, Lord!

Mine is a quiet spirituality that has carried me through the difficult reality of raising a child with an uncertain prognosis. When I began doling out medicine droppers filled with prophylactic antibiotics when he was two months old, I did so out of duty (the doctor insisted), obligation (this is my child to care for) and, okay, trepidation (what if I don’t?).

A couple of years ago, I wrote a lengthy and cathartic essay about our journey with Sickle Cell Anemia; the hospitalizations with their umpteen pokes, the threats of being fired for being off with him too much, the anger with a teacher who decided to treat a 104 degree temperature and day-long pain by telling him to get a drink of water instead of calling me as instructed.

If I sounded a little ticked in that last line, it’s because I still am.

The emotion is as much anger with that type of ignorance as it is disappointment with a scientific community that still hasn’t defined a CURE for this disease. It’s one of the oldest (if not the oldest) known genetic conditions. And it took how many years for someone to figure out that one teaspoon of penicillin a day could extend these lives to near “normal” length? Come on now.

Today, what we have are bone marrow and stem cell transplants. But because of what the procedures require, both are reserved for the most severe cases: children who have strokes and other debilitating complications. My sweetie is not quite sick enough, it seems, for that morsel of wholeness.

Stem cell transplants are much less invasive, but not yet widespread – reserved still for those who are most ill. Our hematologist, Dr. Wanda Shurney of Children’s Hospital of Michigan, once told me that she believes that his Sickle Cell Anemia will no longer be an issue for him by the time he grows up; that science will have refined the technique to make the transplants more accessible to all those who need one.

He sure can.

Till that fine day arrives, let’s donate, support the research, know your genetics, and say a little prayer for my son and the thousands of children like him. Please.

Happy Birthday, Sweetheart!
Mom is so glad you’re mine.

Stefanie
www.stefanieworth.com

For more info:
The Sickle Cell Center at Children's Hospital of Michigan
Sickle Cell Disease Association of America
Michigan Citizens for Stem Cell Research and Cures
Sickle Cell Camp
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