Our inspiring patients are the reason the Cure Sickle Cell Walk & Family Fun Day was created and why we continue to strive to create breakthroughs for every child in our care. All donations benefit sickle cell research and patient care at Children’s Hospital of Philadelphia (CHOP).
Thank you for supporting our sickle cell warriors!
When it comes to Philadelphia Eagles fans, few can boast more allegiance than 17-year-old Austin. The die-hard fan is still bummed about the recent Super Bowl loss but is convinced the team will have another shot soon. Austin was diagnosed with sickle cell disease as a newborn and has experienced anemia, fatigue and shortness of breath at times. Austin has learned to adapt to his body’s needs: hot showers after rainy football games, extra layers of clothing for warmth, frequent rest breaks and not missing medication doses. While his illness has been frustrating at times, Austin has seen improvements in his health over the years. Now a high school junior, Austin loves English, math and physics and hopes to pursue a career in technology.
Deshaun is a kind, caring and selfless 17-year-old who’s very friendly and outgoing. Though he has frequent sickle cell pain crises and makes many trips to the hospital, Deshaun has a great support system who encourage him to do his best no matter what he’s doing – from playing point guard in basketball, to excelling in cooking and graphic arts classes, to earning a 1220 on his first SAT (scoring in the 87th percentile of his class). An honor roll student, Deshaun loves spending time with his younger brother, Daimir, and plans to attend college to study computer science. Says his mom, “I just want him to be happy, to do what he wants to do and choose his own path.”
Enrique, 9, is a bright, energetic, happy and loving boy who’s never let his sickle cell disease drag his spirit down despite chronic pain crises that have damaged his spleen, more than 30 hospitalizations and eight blood transfusions. Enrique was born in Puerto Rico and was treated at El Hospital Pediátrico Universitario del Centro Médico de Puerto Rico, the largest medical hub in the Caribbean. Though sickle cell disease is well understood there, the hospital lacks the latest technology infrastructure. Five years ago, Enrique’s family moved to the Philadelphia area and joined CHOP’s Comprehensive Sickle Cell Center. Since then, Enrique’s health has stabilized. His family knows CHOP is dedicated to finding breakthrough treatments him and others with sickle cell. Today, Enrique is enjoying fourth grade, exploring his community, and hoping for a cure for sickle cell – so all children can enjoy healthy lives with their families.
Jonna is a helpful honor roll student who attends The Philadelphia School for Creative and Performing Arts. Like her older brother, Julius, she was diagnosed with sickle cell as a baby, but unlike him, has not experienced a lot of pain crises. The pair have a great relationship, often bonding over movies and their camp experiences. Now 17, Jonna enjoys all types of dance and says it’s a creative way she has to express herself and make an impact on those around her. She recently became a certified swim instructor for the YMCA and takes great pride is helping young children learn how to swim. Jonna plans to attend college to earn a degree in digital marketing or entertainment management.
Julian is a sweet, playful and very energetic 3-year-old who is full of laughter and loves his dog, Zeke. Diagnosed at birth with sickle cell disease, Julian has not experienced any crises yet, but has been hospitalized several times as a precautionary measure when he developed fevers. “His dad and I try our hardest to find ways to learn more about sickle cell so we can be better prepared for Julian’s first crisis,” says Ariana, Julian’s mom. The family connected with CHOP’s Comprehensive Sickle Center after a visit to their pediatrician in New Jersey, and Julian now attends a hematology clinic in Voorhees, NJ. Julian loves learning at daycare, playing with his friends and wants to become a police officer when he grows up.
Growing up, Julius had a lot of pain crises that kept him out of school for weeks at a time. He watched movies and TV shows to distract himself from the pain. As a result, he became a big movie buff. By age 12, he knew he wanted to have a career in film or entertainment. Now 25, Julius has an associate degree in mass media production from Montgomery County Community College, works part time at Wawa, was recently hired at his local YMCA to work with children in the before and after school program, and enjoys photography. Since starting a monthly intravenous medication program, Julius’ pain crises have decreased in intensity and frequency – making him hopeful for his future and that of his younger sister, Jonna, who also has sickle cell disease.”
Maimouna, 12 is sweet, caring and outgoing. She and her twin sister, Mariam, were diagnosed with sickle cell disease at birth, though Maimouna has experienced more frequent disease flares. The twins love to spend time with their family, attend religious services and do schoolwork. Maimouna is an honor roll student who wants to attend medical school to become a hematologist and help kids with sickle cell and other blood disorders. She and her family are participating in the Cure Sickle Cell Walk & Family Fun Day to raise awareness of sickle cell disease and funds to support treatments and eventually a cure for sickle cell.
Mariam, 12, is smart, confident and funny. She and her twin sister, Maimouna, were diagnosed with sickle cell disease at birth, though Mariam has not experienced as many disease flares as her twin. The pair love to spend time with their family, attend religious services and do schoolwork. Mariam is an honor roll student who wants to attend college, though she is unsure what field she’d like to pursue yet. She and her family are participating in the Cure Sickle Cell Walk & Family Fun Day to raise awareness of sickle cell disease and funds to support treatments and – hopefully – a cure for sickle cell.
At 10 years old, Mason is a young man for all seasons. With a wide variety of interests and abilities – from sports to music, from modeling to anthropology – if there’s something new to learn, this personable fifth grader is “all in.” Mason was diagnosed with sickle cell disease at birth, and his family initially struggled to come to terms with it. But after educating themselves, connecting with CHOP’s Comprehensive Sickle Cell Center and beginning treatment, they are now optimistic for his future. Mason is learning to become his own advocate and that a positive attitude goes a long way toward making himself feel better. Adds his mom, “Participating in Cure Sickle Cell Walk gives Mason an opportunity to feel empowered and in control for what his future holds.”
Montana, 11, is a fierce and independent sixth grader who has almost too many interests to name: dance and drama club, basketball and Roblox, clothes, makeup, math, science and reading. Diagnosed with sickle cell disease at birth through a routine newborn screening, Montana has had a few pain crises that hospitalized her and suffered with acute chest syndrome as a toddler. Today, her disease is mostly stable with the help of medications. She has not needed blood transfusions. Despite her health challenges, Montana sees herself as a normal kid. She enjoys roller skating and making bracelets for friends and is excited to meet new friends at the Cure Sickle Cell Walk & Family Fun Day.
If you met 24-year-old Sarah, you’d never guess that she has been in and out of the hospital her whole life because of sickle cell disease. The recent University of Pennsylvania graduate is about to start a physician assistant program at Case Western Reserve University. While at Penn, Sarah volunteered as an EMT and helped with cystic fibrosis research at CHOP. When Sarah developed hip pain due to avascular necrosis – a frequent complication of sickle cell that can result in collapse of the bone – she didn’t let it stop her. “I’ve learned to understand my body and adapt,” she says. Sarah underwent a successful total hip replacement surgery in 2020. She currently takes a monthly infusion drug for sickle cell and looks forward to the day when she doesn’t always have to think about her health.
Savannah and her brother Kaelon are like two peas in a pod. No matter the toy – from dinosaurs to dolls – the duo share and enjoy each other’s company cherishing the moments that will last forever. Savannah, 7, is bubbly, caring and inquisitive – frequently asking questions about her sickle cell disease and is cooperative when a trip to the hospital is needed. Like most kids her age, Savannah is no fan of frequent blood draws or IV medication, but she understands these are needed to help her feel better. Savannah recently won a “safety paw print” award for exhibiting safety with her classmates. While her future is uncertain, Savannah says she would like to help people, maybe as a doctor, nurse or social worker.
Temi has experienced pain crises since she was 9 months old. At age 10, she was diagnosed with avascular necrosis, a painful complication of sickle cell disease that causes bone to collapse. At times, her pain has prevented her from walking, going to school and participating in her favorite sport: synchronized swimming. In fall 2019, Temi became the first CHOP patient to participate in a clinical trial of a gene therapy for sickle cell. Since then, she’s had more energy to do the things she wants – swimming, school, social activities – and hasn’t been hospitalized for any sickle cell-related issues in more than 4 years. Now a high school junior, Temi plans to attend college, medical school and become a hematologist to help kids like her with sickle cell.
Seven-year-old Zara is a bundle of creative energy. Give her crayons and a sheet of paper and she’ll create an elaborate story to create a solution to any problem. The outspoken South Elementary School student isn’t afraid to voice her opinion but is always considerate of other people’s feelings. Zara has known about her sickle cell disease since she was a baby; her family felt it was important she know the medicines she’s taking and why. Now that Zara’s condition is stable, she’s able to participate in lyrical dance, karate and was recently recognized as best in her 2nd grade class for math and reading – earning her the principal’s special chair in her class for a week. Zara hopes to become a firefighter or police officer.
Zion is a fun, outgoing kid who loves history, math, videogames and music. He is learning how to play the cello and is also taking guitar lessons. Zion enjoys participating in extracurricular activities, including recently participating in two school concerts for Christmas and Black History Month. He also has a talent for writing, so much so, his school recently picked him to read one of his compositions. Zion and his younger sister, Zuri, both have sickle cell disease and have been CHOP patients since birth. Now 13, Zion must be careful not to over-exert himself, as it can bring on a severe sickle cell pain episode. His mom, Shirldaya, says Zion often suffers in silence because he doesn’t want to miss school and hanging out with his friends. “He’s very determined,” says Shirldaya. “He doesn’t let anything stand in his way.”
Zuri, 6, is a little girl with a big personality. She loves board games, arts and crafts, going to church on Sundays, and learning how to read. She also enjoys spending time with her older brother, Zion – who also has sickle cell disease – and her cousins. Zuri has had a lot of health issues during her short life including respiratory symptoms after birth, an enlarged spleen and acute chest syndrome, a life-threatening complication of sickle cell disease. While Zuri is now thriving, her mom, Shirldaya, says she must be extra careful to make sure every fever or minor ailment is monitored – and to contact the doctor whenever she’s concerned. Zuri hopes to become a businesswoman or fashion designer when she grows up.