Marqus Valentine first shared his story with ABC7 in 2019. He was diagnosed with sickle cell disease when he was six months old.
"So, something that Marqus and I did together was start to educate and encourage other sickle cell patients to tell their stories," said Marqus' sister and co-founder of SickCells.org, Ashley Valentine.
Sadly, Marqus lost his battle in June of 2020 at just 36-years-old, but that isn't stopping the work and the mission to keep his memory alive.
"He kept these journals, and in a way, almost like a guide for what to do when he passes. And he wrote one of the journals that hope was probably the most powerful thing you've ever experienced because up until the day he died, there was nothing to help people with sickle cell and now we got a hand in making sure there's things available to help people with sickle cell," Ashley said.
The siblings launched Sick Cells in 2017 to give a voice to those fighting the disease.
In 2018, they lead a sickle cell coalition to help pass disease-specific legislation signed into law. Then, in 2019 the pair were named "Red Cross heroes" for the Sickle Cell and Blood Donation advocacy.
"Mark is my brother. He did a lot of work to encourage blood donation and education about why it's important to do blood donation because he himself with a with sickle cell disease received a ton of blood donated; blood products, blood transfusion what exchanges and honestly they were really life-sustaining, Ashley added.
She said the outpouring of love for Marqus, and what they have been able to accomplish in a short time, has been motivation.
"It's really motivated us. The work isn't done, we have a lot of work to do. This story of Marqus is just one piece of the bigger story, and in his passing, it's almost like we now have the energy to tell the other piece of the story," Ashley said. "In his passing, it's as if he left those journals and told us to keep to keep going down the whole story."
We are just days away from the ABC 7 Great Chicago Blood Drive and blood donation is considered essential during the pandemic.
For more information on how you can donate, visit The ABC7 Great Chicago Blood Drive