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When Your Child Gets Diagnosed With Sickle Cell Disease

Susie and Tymia Pitts

Fear, anxiety, exasperation… this is what ran through my mind when I heard the words, “Your daughter has sickle cell disease.” Being told that your child has a chronic illness is something a parent never wants to hear. When my daughter Tymia was first diagnosed, I was terrified. But that terror quickly turned to determination to give her the best care I could.

Sickle cell disease is an inherited blood disorder that affects as many as 100,000 people—90% of whom are of African descent. The disease causes red blood cells to change from a normal round, soft blood cell to a sticky, hard, sickled shaped blood cell under certain stressors. These abnormal blood cells can stick together and block blood flow and oxygen causing pain and other complications. There is no widely used cure for sickle cell disease and regular blood transfusions are one of the most common treatments.

Over the course of Tymia’s life I have come to accept that it’s not a matter of if she will get sick, but rather a question of when and how bad it will be when she does. I fear each night that I will wake up to her piercing screams because of the pain caused by her disease. More than that, I fear the helpless feeling I get during her sickle cell crises because there is nothing I can do to alleviate her pain.

There have been many trips to the hospital where I’ve watched Tymia through my car’s rearview mirror, wishing for the twinkle in her eyes to return. When we arrive at the hospital, with a broken heart, I pray by her bedside and hope for her to get better soon. To date, Tymia has been hospitalized over 56 times, receiving more than 58 blood transfusions and multiple surgeries to help save her life.

Being Tymia’s mom has changed my world, how I view life and what I stand for. I’ve become a strong advocate for my daughter and for others who have this debilitating disease. With my daughter by my side, I organize and host blood drives with the American Red Cross—thanking blood donors for their lifesaving donations and educating people on the importance of donating blood. We let these donors know that their blood donations help not just sickle cell patients, but others who may be in need because of illness, disasters or traumatic injuries.

For those who may be reading this, I urge you to join me in becoming a blood donor. Please don’t wait until it’s a loved one that needs a blood transfusion— when emergencies arise patients with an immediate need rely heavily on donated blood stored in reserve on hospital shelves.

Donate Blood to Help Save Lives

Right now, the Red Cross has a severe shortage of type O blood donations and urges type O donors – as well as eligible donors of all blood types – to give now to help ensure blood products are available for patients like Tymia who depend on transfusions. You can make an appointment by using the Blood Donor App, visiting RedCrossBlood.org or calling 1-800-RED CROSS (1-800-733-2767).

Those who present to donate before March 17 will automatically be entered for a chance to win one of five trips to the season 8 world premiere of Game of Thrones. Terms and conditions apply, and are available at RedCrossBlood.org/HBOGameofThrones. Plus, those who present to donate March 7-12 will also receive exclusive Game of Thrones swag including: a T-shirt, stickers to unlock a unique Snapchat filter and other items, while supplies last.