Each family facing sickle cell disease (SCD) has a story worth sharing, and SCD Stories is here to tell it. As the host, I work with our guests to bring real-life stories to light, showing what families go through and the strength they find to keep fighting. The podcast gives a voice to people whose challenges with SCD often go unseen, helping listeners understand why this disease deserves more attention.
In the United States, 1 in 13 African Americans and 1 in 100 Latinos carry the sickle cell trait, and it’s not limited to these groups—1 in 333 white children are born with the trait, too. When two people with the trait have a child, there’s a one in four chance the child will be born with SCD. Despite how many lives it touches, SCD still doesn’t get the focus or funding it needs, leaving many families struggling to find information and support.
In this season’s first episode, we meet Marilyn Jackson, a grandmother who has taken on a strong role in supporting her young grandson diagnosed with SCD. Marilyn’s journey is one of love and determination, showing how she’s balancing caregiving with advocacy. As a vegan chef, she’s also using her knowledge to support her grandson’s health in ways that go beyond standard treatment. Marilyn’s story sets the stage for this season, giving us a close look at how families find strength together, even when the odds feel stacked against them.
Turning Heartbreak into Action
When Marilyn’s grandson was diagnosed with sickle cell disease at just three weeks old, everything changed. She could tell something was off from the way he cried and struggled, but hearing the actual diagnosis still hit hard. Like so many families dealing with SCD, Marilyn’s family didn’t get much help beyond a quick brochure and a “see you in three months” from the doctor. But Marilyn wasn’t about to sit back and wait—she needed answers and wanted to help her grandson right away.
Marilyn has the sickle cell trait herself, so she knew this disease could bring a lot of tough days for her grandson. From looking up treatments to learning what foods might help his symptoms, she took matters into her own hands. Marilyn wanted to be ready for whatever challenges came next, not just for her family but for other families facing the same struggles. She believes parents and grandparents need real information and resources right from the start—not just a piece of paper and a pat on the back.
Marilyn’s story shows how one person’s love and fight can make up for what the healthcare system leaves out. Instead of letting this challenge overwhelm her, she decided to dig in and learn everything she could. By doing that, she’s not only standing by her grandson but also helping other families find hope and strength.
Facing a System That Falls Short
One of the biggest challenges for families dealing with sickle cell disease is the lack of support and understanding from the healthcare system. Marilyn quickly saw how hard it was to get real help for her grandson. The doctors gave them a quick overview, some basic meds, and sent them on their way, leaving Marilyn and her family to figure out the rest on their own. She was frustrated, knowing that her grandson deserved better care and that the family needed more than just the bare minimum of information.
For Marilyn, this gap in support felt like a huge problem. Families dealing with SCD need more than a brochure—they need guidance on things like nutrition, handling pain crises, and what to expect day-to-day. Marilyn saw how important it was to learn ways to help her grandson manage symptoms beyond just taking medication. As a vegan chef, she even looked into foods that might make things easier for him. But she knew not every family would have the time or knowledge to dig that deep.
Marilyn believes there’s a lot of missing education when it comes to SCD. Families need real guidance, not just from doctors but from people who understand the daily challenges of living with this disease. Marilyn’s story reminds us that families shouldn’t have to search so hard for answers when facing a condition as serious as sickle cell.
A Scare That No Family Should Face
Marilyn’s grandson has been through more than most kids his age. One of the toughest moments came when he was in the care of his biological father, and things took a terrifying turn. Marilyn’s daughter got a call saying her son was unresponsive, his eyes were rolling back, and he was barely breathing. Marilyn rushed over, but by the time she got there, his lips were blue and his body was cold. It was every family’s worst nightmare.
She quickly called 911 and had to perform CPR while they waited for the ambulance. Her grandson was rushed to the hospital, where he coded four times. Doctors worked for hours to stabilize him, and when Marilyn and her daughter finally saw him, he was covered in tubes and connected to machines. They soon found out he had shaken baby syndrome, with bleeding in his brain and behind his eyes. The doctors didn’t think he would make it.
But this little boy fought hard. After weeks in the ICU, he pulled through, but his life is far from easy. He still faces serious health issues, including kidney problems and the effects of his brain injury, and he’s on several medications just to get by. Marilyn and her family now have to manage these extra challenges along with sickle cell, making their journey even tougher. Marilyn’s strength through it all is a reminder of how far love and determination can go, even when faced with unimaginable challenges.
How You Can Join the Fight Against Sickle Cell
Marilyn’s story is just one example of the battles that families across the country face with sickle cell disease. Families need support, understanding, and a healthcare system that does more than the bare minimum. SCD Stories brings these stories to light, showing just how powerful a community can be when we come together to help.
If you’ve been moved by Marilyn’s journey and want to make a difference, there are ways to get involved. Whether you’re able to donate, share the podcast, or volunteer your time, every bit helps. Visit www.scpascc.org/ to learn more about supporting the sickle cell community. Together, we can help more families find strength, resources, and hope.
Catch This Episode on Your Favorite Podcast Platform
Want to hear Marilyn’s story straight from her? As of November 10, 2024 12:00 PM EST, you can catch this episode of SCD Stories on all major podcast platforms, thanks to Simplecast’s one-click distribution. Whether you prefer Apple Podcasts, Spotify, Google Podcasts, Pandora, Amazon Music, and many others. just search SCD Stories and listen wherever you like. Don’t miss out on this powerful story—tune in and join the conversation.
Sources
CDC. “Data and Statistics on Sickle Cell Disease.” cdc.gov
CDC. “What You Should Know About Sickle Cell Trait.” cdc.gov
Sickle Cell Disease Association of America. “Sickle Cell Trait Facts.” sicklecelldisease.org
SCD Stories Podcast, Season 2, Episode 1 - Interview with Marilyn. Transcript provided by SCPASCC.
Comments