Anyone who visits my blog with any frequency (or anyone who has taken the time to read the tagline in the top right corner) knows that my ancestry is Italian, and I’m quite proud of it. I occasionally blog about it because I want people to get to know me and my heritage, I want them to love and embrace it for the wonderful and rich culture it is, and I want them to know what it’s like because that’s the world many of my characters come from in my fiction. I figure if my readers know and love my world, they’ll know and love my characters’ worlds, too.
Just last week I was contacted by someone who has now become an online friend. He shares my heritage, but he pointed out part of our culture that isn’t so wonderful, and it’s something that, while it does touch Italian-Americans more frequently than others, it can touch us all. I invited him to guest post here today to share his knowledge with you. Without further ado, I give you Craig Butler.
On May 5, the Cooley’s Anemia Foundation is holding Care Walk 2013, a series of walks designed to show support for all those living with the blood disorder thalassemia (often called Cooley’s anemia) and to raise funds for the Foundation’s programs on behalf of people with thalassemia. Thalssemia is disproportionately found in people of specific heritages, including those of Italian descent.
You’re probably asking “What is thalassemia?” It’s a genetic blood disorder, so it’s something a person is born with, not something they catch. A person who has a severe form, such as thalassemia major, has blood that doesn’t carry oxygen around to the body the way it’s supposed to. If left untreated, this causes a severe anemia and eventually brings about death.
Gabriella, the beautiful little girl whose picture you see, has thalassemia major. Fortunately, she gets treatment: she goes to the hospital every couple of weeks and spends the day getting a blood transfusion. She’ll need to do this her whole life—unless a cure is found.
The blood transfusions save Gabriella’s life, but there’s also a big downside to them. They overload her body with iron, way more than the body knows what to do with. So she has to take a daily drug treatment to help get rid of that extra iron. If she doesn’t, it can destroy her heart, liver or other organs, or cause other problems like diabetes and osteoporosis.
For many thalassemia patients, that daily drug treatment involves sticking a needle into the body and pumping iron in for 8-12 hours a day. For their entire lives.
So having thalassemia is a big burden. That’s why the Cooley’s Anemia Foundation is around:
To help these people, to help find better treatments and to help find a cure.
The annual Care Walk is one of the Foundation’s most important fund raisers. The better it does, the more the Foundation is able to do to help Gabriella and all those suffering from thalassemia.
Care Walk is designed for maximum convenience: We ask people to set up a Walk at a time and place that works for them. It can be as simple as walking around your neighborhood with a couple of friends or as involved as organizing a larger walk in a park or other area.
Our goal is to have at least one person walking for every person with thalassemia in the U.S.!
Because of the Cooley’s Anemia Foundation, Gabriella’s mother has great hope for her child. “I want to let everyone know that, even though the illness is not curable, it is treatable. I want to encourage parents that it’s not the end of the world if you have a child with thalassemia. Your child will still have a wonderful life and future if they get the proper care—and the future is getting brighter by the day.”
And the Cooley’s Anemia Foundation is here to make that brighter day get here as soon as possible. You can register for Care Walk or support someone who is walking by going to http://tinyurl.com/CareWalk2013 or you can email n.perozo@cooleysanemia.org for more information. And learn more about thalassemia and the Cooley’s Anemia Foundation at www.thalassemia.org. Thank you.
So a big thank you goes out to Craig Butler for writing this guest post and informing us about thalassemia. Maybe the steps we take on May 5 will be steps toward a brighter future for thalassemia patients.
4 Responses
I’d never heard of thalassemia. Thanks for educating me!
I never did either, Frog5, until Craig reached out to me. Isn’t it great that our world is shrinking to the point that we can meet people who we otherwise would never have met and help people who we otherwise would never have been able to have helped?
Stacy – Thank you so much for allowing us to spread information about thalassemia and about Care Walk. We appreciate this!
Craig
My pleasure. I hope this little message reaches a lot of eyes and ears.