patient story

patient name: Sydnee Penno

age: 20

condition: sickle cell disease

seen in: hematology/oncology

Sydnee Penno is no stranger to Dayton Children’s, having been a patient for 20 years. Sydnee was born with sickle cell disease, so for most of her life, Sydnee has been cared for by Mukund Dole, MD. While knowledge and treatment of sickle cell have changed tremendously over the last two decades, the compassion and support from Dr. Dole and the Dayton Children’s team have been unwavering. 

about sickle cell disease 
Sickle cell disease is a lifelong genetic disease that affects the red blood cells. Typically, red blood cells are oval-shaped but in individuals with sickle cell disease, the red blood cells become “sickled” in shape like a crescent moon which can cause the cells to become stuck in small blood vessels. Individuals can experience pain and anemia and are at increased risk for strokes, organ damage, infections, and other serious health problems 

Today, all infants are screened at birth for sickle cell disease and other hemoglobin disorders. Parents of child-bearing age are encouraged to be screened if their hemoglobin status is unknown. If both parents have sickle cell trait, then there is a 25% chance of having a baby born with sickle cell disease.  

Dr. Dole is very optimistic for those children with sickle cell disease. There are several new curative options, including improved stem cell transplant procedures and gene therapy, that are becoming more prevalent and offer hope for patients in the near future. 

an evolution in care and treatment 
Sydnee’s father, Chris, also had sickle cell disease. Sadly, he passed away from sickle cell complications in 2012. During his early diagnosis and treatment, knowledge of the disease was extremely limited, even among doctors and nurses. When Sydnee was born, testing, knowledge and treatments for sickle cell had advanced, but were still much more limited than they are today.  

“We used to do forums with Dr. Dole and Wright State University to help educate medical students,” Shenelle, Sydnee’s mom, recalls. “Sydnee was kind of a ‘poster child’ for sickle cell disease in Dayton – she was on a postage stamp, participated in Home Run for Life [with Anthem Blue Cross Blue Shield and the Dayton Dragons], and was granted a Special Wish of going to Disney World [through the Special Wish Foundation].”  

Over the years, Sydnee has been on a variety of medications and treatments, all to help improve her pain and lessen her hospital stays. Dr. Dole has "embraced our family,” Shenelle said, helping them navigate the different treatments and improve her daughter’s life with sickle cell. As she has gotten older, Dr. Dole has turned to Sydnee to make sure she has a voice in her care. 

"I used to be very weak when it came to my condition and would ignore it. I was frustrated I was not a normal kid. Now, I have a strong mindset about it. If I start to feel pain, or get a fever, I take medicine or go to the emergency room,” Sydnee said. “At the end of the day, I have to take care of myself, but also have fun and live life to the fullest.” 

a tough pain crisis
Earlier this year, Sydnee experienced one of her most severe pain crises so far. She was hospitalized for two weeks and was in such pain that she could not do things like brush her hair or walk to the restroom. Shenelle was right by Sydnee’s side, working with Sydnee’s care team to try to make her as comfortable as possible, knowing her daughter was struggling. 

“During that episode, Sydnee asked me if she was dying. It’s the most disheartening thing as a parent – when you can’t identify what hurts on your child and comfort them, or can’t make it better,” Shenelle said. 

Through those extremely difficult couple of weeks, Sydnee’s care team was right by her side, as they had been for the previous 20 years. Along with Dr. Dole, Brandy Stamper, BSN, RN, is another of the many caregivers that have supported their family over the years. During this admission and even before, she has been a sounding board for Shenelle and Sydnee. Shenelle says Brandy is “like Sydnee’s mom at Children’s when I can’t be there.”  

Dr. Dole and Sydnee’s care team helped treat Sydnee’s pain and started her on a new medication in the hopes that Sydnee will not have another crisis that severe. So far, it has been very helpful! “The medicine has been like a miracle drug. Since starting it, Sydnee has not had pain or needed to be admitted,” Shenelle shared. 

moving forward with sickle cell 
As much as possible, Sydnee is not letting sickle cell control her life. She is very much into fashion and shopping, and loves spending time with family, friends and her dog, Nala. She also currently works at a doctor’s office. Inspired by the care that she has received at Dayton Children’s, Sydnee’s goal is to become a pediatric nurse. 

“Every time I’m sick and at Dayton Children’s, they take care of me. There aren’t many people in the world that want to do that, and that is special,” Sydnee shared. “At the end of the day, I do have sickle cell, but that will not prevent me from being a normal adult doing everything I can in life. There are things I have to do to take care of myself that other people my age do not, but I make the best out of life and make everything count, because you only live once.” 

Shenelle has also been inspired by her family’s experience at Dayton Children's - becoming an employee herself! 

“I’m at an advantage where my work team at Dayton Children’s wants to be educated on sickle cell, they show compassion and truly care about me and Sydnee’s well-being,” Shenelle said. “It’s been an uphill journey, but I hope our story can help families to not give up hope. To help children that have sickle cell know that Dayton Children’s truly cares, and that you can navigate and still have some kind of life living with this disease."