As the morning sun bathes the colorful array of flowers before her in a gentle light, Maddie Grace reaches to make selections for a perfect bouquet. 

“The Bells of Ireland are my favorite,” Maddie says as she pulls the long, elegant stems from a vase. “We also have sweet williams, and these are called pincushions.” 

Maddie refers to her work at the Pistil House, a St. Petersburg flower and wine bar, as a “dream job.” She loves connecting with people and helping them to turn little moments into celebrations with the blooms she selects. 

“I do love flowers,” Maddie says. “They’re so dainty and gentle, and they each have their own personalities.” 

At age 25, Maddie has a unique appreciation for embracing life’s special moments. 

That has everything to do with the life she’s lived.

By all accounts, her life’s journey – certainly, her medical journey – has been extraordinary. 

Maddie’s History 

Maddie was born with a rare, severe congenital heart condition called an interrupted aortic arch (IAA).

She has undergone two heart transplants and a kidney transplant, and so very much in between. 

Her earliest years of treatment were in Tampa, but starting at age 3, Johns Hopkins All Children’s Hospital became part of the backdrop of her childhood. 

It was All Children’s back then. Maddie received care at the former hospital on 6th Street until the new state-of-the-art facility, now Johns Hopkins All Children’s, was built.

A central figure in her treatment was Alfred Asante-Korang, M.D., a skilled and compassionate pediatric cardiologist dedicated to the care of heart transplant patients and accustomed to complex, high-risk cases. 

3-year-old Maddie didn’t know it then, but this doctor and his talented team would guide the young patient and her family through the next two decades of care. 

“This is a lifetime journey,” says Melanie, Maddie’s mom. “It’s not just, ‘let me fix you and you’ll be good and I won’t see you again.’ It’s a journey of trust, and Maddie absolutely trusted him.” 

“The more complex a medical condition is, the more frequently I’ll see the patient,” Dr. Asante-Korang says. “There are more procedures, more hospitalizations, more testing. We get close to our families. Maddie knew we were there for her.” 

Maddie would benefit from such a level of support. She’s documented and expressed her courageous medical journey at Johns Hopkins All Children’s in numbers. The list goes on for several pages. Here is a sampling: 

• 2500+ days in Cardiovascular Intensive Care Unit (CVICU) 

• 500+ blood draws 

• 425+ days on dialysis 

• 350+ IV catheters 

• 275+ pediatric heart transplant clinic visits 

• 90+ anesthesiology procedures 

• 65+ heart catheterizations 

• 48+ pediatric emergency room visits 

But there is another list that Maddie keeps close to her heart: a mental list of sweet and powerful memories that she and her family share of her time at Johns Hopkins All Children’s.

Maddie’s mom will never forget Dr. Asante-Korang in a pediatric trauma room with his sleeves rolled up and determination on his face, fighting to save Maddie’s life after she experienced seizures at age 9. 

Maddie recalls the anesthesiology team that knew her well and calmed her fears each and every time she underwent a procedure. 

She remembers amazing Child Life specialists who played with her as a little girl and who hung out with her as a teenager to help make the hospital experience a little easier and a lot less frightening. 

She has fond memories of the environmental services staff who cleaned her hospital room and never failed to cheer her up. 

During a long hospital stay as a teenager, she recalls convincing her doctors to allow her to go home just long enough to celebrate her 16th birthday and to get her driver’s license. She showed it off with pride when she returned to the hospital three days later.

Maddie will never forget the amazing support of family and friends, especially the dedication of her mom, who loved and guided her through every difficult moment. 

Hospital With Heart 

This year, Maddie is celebrating 10 years with her 2nd transplanted heart, just as Johns Hopkins All Children’s celebrates its 100th birthday. 

 “I wish them the happiest of birthdays,” Maddie says. “Thank you for working to heal every sick kid that comes through those doors. That’s why I’m here, because of All Children’s.” 

Dr. Asante-Korang is thrilled to see Maddie doing well. 

“To see patients like Maddie thrive, this is the joy of practicing medicine,” he says. “It helps us to remember why we’re here.” 

Maddie has transitioned into adult care. While she is healthy now, her life is not ordinary. She takes 15 medications daily. Her schedule is peppered with doctor visits and IV infusions, and on bad days, trips to the E.R. She will likely have more surgeries in her future. 

But Maddie chooses to live fully. Beyond her work with the flower shop, she does wedding consulting on the weekends, and she still finds time to advocate for other heart patients. 

She is enjoying life with her boyfriend, Matt, and their playful golden doodle, Miller.

She hopes to take a special trip with her mom soon, just the two of them. 

While life’s journey is uncertain, Maddie is determined to make the most of hers – and to share her optimism with others. 

“Life is never going to be perfect,” Maddie says. “But find the good moments. You’ll remember them forever. One day you’ll be able to look back and see all that you have overcome.”