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Meet William: 2020 Family Advocacy Week Champion

William is smiling with a fountain and grassy landscape in the backgroundWilliam is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020. Through this special event, William and his family will share information about his health journey, Dayton Children’s Hospital’s role in providing William with necessary health care services, and why the public and our elected officials must invest in the future of kids like William.

William was diagnosed with sickle cell anemia at birth.

“The uncertainty of what was to come emotionally was hard for our family to deal with,” says Donna, William’s mother. “But after we got his pediatric hematologist set up, it helped us understand how to be proactive in his care.”

Living in Wyoming at the time of his diagnosis, William and his family had to drive two hours to the nearest children’s hospital in Colorado.

“Growing up in a rural town with no children’s hospital and living two hours away, we always feared what if we couldn’t make it in the event of an emergency,” says Donna.

The family eventually moved to Dayton, Ohio, with Dayton Children’s Hospital now less than 10 minutes away.

“With the many late-night hospital trips, having access to on call physicians has made things a lot better,” says Donna. “I feel having proactive care is part of the reason, and I love how the hospital is helping William advocate and communicate with health care providers.”

William is now 11 and thriving. His number of hospital visit have decreased. William is an artist and loves creating and drawing his own comic strips.

“Sickle cell anemia isn’t just a disease affecting Black people,” says Donna. “It deserves more attention, funding and options for families who are faced with it.”

 

 

 

 


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