Meet a Mom on a Mission to Help Sickle Cell Anemia Families

I think it’s safe to say most people probably dream of making the world a better place in some way. Many of us are able to do just that by gifting the world with wonderful children—if I do nothing else in life, I know my children will be my greatest legacy.

Perhaps New York mom Diana Lemon feels the same way, because she named her daughter “Dream.” But this Mom took it a step further when a nightmare called sickle cell anemia threatened her daughter—not only did she fight to get her daughter the best care, she fought to improve access to at-home care for all New Yorkers.

Sickle cell anemia is a genetic disorder that causes abnormal hemoglobin production, which in turn distorts the shape of red blood cells into a rigid “sickle” shape that gets caught along blood vessel walls, creating blockages and halting the flow of oxygen.

According to Westchester News 12, Dream was born with the disease and following a stroke at age 5, she bravely fought through years of blood transfusions and chemo. Ultimately, Diana’s “dream” for her daughter was a shot at life, and she was willing to literally give of herself: She donated stem cells for her daughter’s life-saving stem cell transplant surgery.

With one dream fulfilled, a new sort of nightmare began for the family when Dream came home from the hospital. The girl needed to spend over half her day being administered medications through IV infusions directly in her heart. That would be nerve-wracking enough in a hospital setting, so Diana asked for at-home medical care from a professional nurse to put in the line. Her insurance refused, claiming it was not medically necessary.

Fortunately, local legislators and a nonprofit group were able to step in and get Diane and Dream financial assistance, but Diana knew she wasn’t the only parent facing the same nerve-wracking prospect of managing at-home medical needs. So she decided to do something about it.

Working with sponsors in New York’s State Senate and Assembly, Diana has been lobbying for Dream’s Law, which would require insurance companies to cover professional at-home treatment. If passed, it would be among the first of it’s kind in the nation.

It remains to be seen if Dream’s Law will succeed. But we can think of no better testament to World Sickle Cell Day (June 19) than to have a little girl named Dream be responsible for making the dreams of other parents come true.

Ronald Ledsen

Ronald Ledsen

After emigrating from his native Sweden, Ronald spent a stint in the Merchant Marines while trying to work out what he wanted to do with his life. He discovered a love of writing while helping a friend write anonymous Harry Potter fan-fiction online; he discovered meaning to his writing when he began journaling after an anxiety disorder diagnosis. Ronald is most relaxed when spending quiet time with his wife, two sons, and hyperactive cat.

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