Beltsville, Maryland, United States
“I remember my journey into motherhood like yesterday. My twins performed summersaults in my belly. Those involuntary movements felt like millions of butterflies trapped inside my stomach. While expecting, I was anxious to see how my daughters would look and who they would become. Many thoughts of planning their futures and inability to get comfortable kept me up at night. Seven days after celebrating my 26th birthday, I gave birth to twin daughters. Little did I know motherhood would change my life and how I interact with others forever.
When one of my twins was three months old, I received a letter in the mail from the health department notifying me that my daughter’s genetic newborn screening test results were available. The note confirmed my greatest fear: my baby girl had hemoglobin SS disease, which is the most severe form of sickle cell disease (SCD). She is among millions of people who live with SCD, the most common genetic disorder in the world. Instead of her red blood cells being round and circular, they are shaped like crescent moons, which can cause extreme pain and other complications.
This one hemoglobin mutation would change everything about how I interact with the world. Although my dreams for my daughter haven’t changed, the part I play to get her there has. Now, everything I do seeks to be a voice for her and others to build a bridge between healthcare, caregivers, and patients so SCD patients can have a better quality of life.
I started my blog CleverlyChanging.com to document our lives raising a child with special health needs. In 2019, I began the Cleverly Changing Podcast to empower diverse homeschooling parents. In 2020, I published “A Sickle Cell Coloring Book for Kids” to help families teach their children how to live healthy lives with SCD. Now I live to educate parents and advocate for children with special needs. " - Elle Cole, Advocate for Children with Special Needs