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FAD Alum Newsletter -- Alumni Life Changes

For Sickle Cell Awareness Month, Speak Now for Kids spoke with Danielle, Olivia’s mom, to learn about the signs and symptoms of Sickle Cell Disease (SCD). If you saw how active Olivia is in her community, you would never guess that she also has SCD and fights through pain, fatigue and swollen limbs every day. Olivia faced SCD head on at Ann & Robert H. Lurie Children’s Hospital of Chicago and endured her condition with a positive attitude.

My daughter was diagnosed with SCD at the delicate age of just 7 days old. By 5 months, Olivia had endured painful dactylitis (inflammation of the fingers) and frequent colds due to SCD’s compromise on the immune system. At age 6, Olivia had a splenectomy, which weakened her immune system even more.

After Olivia’s splenectomy, she wanted to know if she was the only person in our town with SCD. She wondered if there were other children like her that had gone through the same trials she had. For her 7th birthday, instead of asking for a gift, this special little girl asked if she could give a party to all children living with SCD. And so, the Olivia’s South Suburban Sickle Cell Awareness Party & Blood Drive began in the fall of 2017. 

She recently held her 2nd Sickle Cell Awareness Party and Blood Drive and the party was full of food, music and crafts. Most importantly, we collected 32 blood units that could potentially save 100 people this year. Our family supports Olivia’s advocacy efforts because we want to remind lawmakers that SCD still needs a cure. SCD is the most common inherited blood disorder, yet, there is a lack of research funding compared to other diseases. As a parent, the inequity is heartbreaking, but together we can make a difference. 

Olivia was the youngest to receive an American Red Cross Heroes Award for her selflessness and creativity. This thriving 8-year-old loves to read and dance. She has already triumphed over a number of test, transfusions and surgeries. Olivia enjoys school and says she is going to be a doctor when she grows up. 


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