Meet Ruby Rose and her mom, Darleni,

Darleni says, “Learning that my daughter Ruby has sickle cell disease was a complete shock to our family. I knew I had the trait, but her father did not know he had the trait until Ruby was born and diagnosed.⁠

When Ruby was 2 years she cried nonstop without sleeping or eating. Her body was stiff, and she couldn’t sit or stand. We had no idea what was happening as she was only 2 years old and couldn’t verbalize what was happening to her. We took her to the ER a total of 3 times before they found out what was happening– a sickle cell pain crisis. We quickly found it was a feature of sickle cell disease we could not control. Not being able to take the pain away is tough.⁠

As Ruby’s mother, I strive to make sure she feels and understood. I have type 1 diabetes, so I teach her the importance of taking medicine, through example, showing her how taking my medicine helps keep me well to encourage her to take hers.⁠

When it’s time to get out of the swimming pool, I get out with her and when we’re making sure she’s drinking her water, me, her father and siblings make sure we’re drinking as much as her, so she doesn’t feel different.⁠

Sickle cell has taught me resilience, faith, and what immeasurable faith looks like, but it has also taught me how to have empathy. We want to make sure Ruby feels loved and supported. We’re in solidarity with her.”