Meet Taylor: A young author rewriting the story on sickle cell

When Taylor Hamilton was born at East Cooper Medical Center in 2017, everything seemed perfect.

Just a few weeks later, her parents received a phone call that changed everything: Taylor’s newborn screening had detected a hemoglobin abnormality – a pattern consistent with sickle cell disease.

That screening, now a routine part of newborn care in South Carolina, exists because of the pioneering work of retired MUSC Children’s Health hematologist-oncologist Sherron Jackson, M.D. Decades earlier, Jackson led efforts to implement universal newborn screening for sickle cell disease across the state. Her work ensured that babies like Taylor could be diagnosed early, often before any symptoms appeared.

Understanding sickle cell disease

Sickle cell disease is a lifelong, inherited blood disorder that affects hemoglobin, the protein in red blood cells that carries oxygen throughout the body.

In people with the disease, red blood cells become hard, sticky, and shaped like a crescent or sickle. These misshapen cells can clump together and block blood flow, causing:

• Episodes of intense pain, known as a crisis
• Frequent infections
• Fatigue and anemia
• Damage to vital organs over time

Early diagnosis and treatment can dramatically improve outcomes, helping children with sickle cell live longer, fuller lives.

Diagnosis, fear and a way forward

Taylor’s mother, Desiree Middleton, carries the sickle cell trait. Most carriers never show symptoms – but they can unknowingly pass the disease on to their children.

Hearing that Taylor had sickle cell disease was terrifying. But knowing she would be cared for by MUSC’s sickle cell experts gave the family strength and direction.

“Over time, our fear was replaced with action, vigilance and unwavering love,” Middleton said.

Taylor’s care was referred to the MUSC Shawn Jenkins Children’s Hospital, home to South Carolina’s leading center for pediatric hematology and sickle cell care. While East Cooper had taken great care of Taylor at birth, MUSC had the specialists who could confirm the diagnosis, start treatment and guide the family through what lay ahead.

And it was there that the family met Dr. Sherron Jackson, the very physician whose decades of research and advocacy had made newborn screening possible. Now, she was with them in person, walking with them from the very first step of a lifelong journey.

Living with sickle cell – with MUSC by her side

Thanks to a proactive care plan from MUSC, Taylor lives a full life. She goes to school, plays with her sisters, and smiles often, but her days are carefully managed to protect her health. She takes daily medications and avoids triggers that could lead to a crisis.

Despite their efforts, pain episodes still come.

“When a crisis hits, everything stops,” Middleton said. “She can’t do anything but lie in bed while we treat the pain and pray.”

MUSC is doing more than just helping Taylor through today’s pain: They’re working to change tomorrow. Through the Darby Children’s Research Institute, scientists are developing breakthrough therapies that aim to prevent sickle cell crises before they start.

Promising advancements in sickle cell treatment

One promising approach is the Ruby trial, a clinical study at MUSC using CRISPR gene editing to help the body produce healthy red blood cells. By targeting the root cause of sickle cell disease, this therapy has the potential to eliminate painful episodes altogether.

Early results are already life-changing: patients in the trial have reduced hospital visits, stopped monthly IV pain treatments, and regained their independence. It’s research that’s not only advancing science but giving families like Taylor’s something they’ve longed for: a future with fewer crises and more possibilities.

“There are far more advancements now than 20 years ago,” Middleton said. “People are invested. People care.”

Turning love into action: Fundraising for research

The care Taylor receives today is possible because of decades of investment in research, much of it driven by people who care deeply about children’s health.

Following Taylor’s diagnosis, her older sisters Amaya and Armani jumped into action to help. They launched Mani and Maya’s Fruity Treats, a homemade lemonade stand on their front lawn. Together, they raised over $800 to support sickle cell research at MUSC.

Their love for their sister became something bigger: a way to give back, spread awareness and bring others into Taylor’s story.

Raising awareness and building community

As she’s grown, Taylor has become an advocate in her own right. In 2022, she and her sister Maya were selected as Children’s Miracle Network Champions for MUSC, sharing their story with the community through Radiothon and other events.

Today, Taylor’s smiling face can be seen in local businesses on fundraising displays, helping raise awareness for sickle cell disease and inspiring others to support children’s health. According to her mom, Taylor proudly calls the people who recognize her “her fans.”

“It’s not just a hospital – it’s a whole community that lifts us up,” Middleton said.

Taylor’s next chapter: Advocacy and inspiration

This year, Taylor turned eight and marked the milestone with something truly incredible: she’s now a published author.

Her new children’s book series, “The Adventures of Taylor Renee and Sickle,” follows a brave young girl and her superhero best friend: a red blood cell named Sickle. The two meet in the hospital after a sickle cell crisis, and from there, their adventures begin.

Together, they travel through Taylor’s bloodstream, explore sunny beaches and even take their very first plane ride. Along the way, Taylor’s story gently teaches young readers about sickle cell disease, showing what it’s like to live with the condition, all while embracing friendship, fun and safety.

Fundraise like Taylor

Taylor’s story is one of early diagnosis, expert care and the strength of a family supported by a whole community. It’s also a story of what’s possible when generosity fuels discovery – when donors invest in care, research and the spaces that bring both together.

Every gift, every lemonade stand or dollar raised brings us closer to a future where kids like Taylor don’t just live with sickle cell – they thrive.