Ambassadors
2024 Ambassadors
Our inspiring patients are the reason the CHOP Cure Sickle Cell Walk & Family Fun Day was created and why we strive to create breakthroughs for every child with sickle cell in our care. All donations benefit the Comprehensive Sickle Cell Center at Children’s Hospital of Philadelphia.
Caylin’s Story
When Caylin was diagnosed with sickle cell disease at birth, her mother, Melissa, felt “fear of not knowing what her life would entail.” Over the years, Caylin has had many health challenges, including pain episodes, and needed to be hospitalized multiple times. But their CHOP team created an atmosphere of trust and reassurance: “During our first CHOP visit,” says Melissa, “we were told we could contact our care team whenever we needed assistance, and they would support us. This is a true testament to our experience.” When Caylin graduates from college, she hopes to be employed by CHOP in a position that will let her advocate for and support children.
Kaaliph’s Story
When Antonielle describes her 2-year-old son, Kaaliph, she uses terms that glow: “Animated. Vibrant. Witty.” Unfortunately, the toddler’s sickle cell disease often causes frightening symptoms that disrupt his young life. “The journey has been rather challenging,” Antonielle shares. “Every time his fever peaks to 101, I drop what I’m doing and rush him to the ER.” In the past year, Kaaliph has needed multiple hospital visits, one resulting in a blood transfusion, “which was heart-wrenching.” Nonetheless, she sees a bright future for him: “He loves and is quick with technological devices and problem-solving. We believe he’ll be an engineer of some sort!”
Saniya’s Story
Saniya, 19, has a great sense of humor, loves people and enjoys dance and modeling. But this outgoing young woman says that living with sickle cell disease is challenging: “It’s hard, sometimes, being sick and needing to take medicine.” She’s been cared for at CHOP since she was a baby, and she calls it “the best hospital ever.” She’s excited for her future — she is headed to college to study nursing and wants to be a pediatric nurse, just like the ones who have taken care of her at CHOP.
Sarai’s Story
Sarai, 12, has been in and out of the hospital for sickle cell disease symptoms since she was about 6 months old. There have been times when she was hospitalized every month, and times when she has gone years without admission. Her mother, Aliya, admires Sarai’s fighting spirit: “She looks this disease in the eyes daily and chooses to fight,” but Aliya adds that Sarai — who has four siblings — is also exceptionally caring. “She’s always checking up on her siblings and is very nurturing and loving. We call her ‘Mom Mom’ because she is truly the other mother!” Sarai has been a CHOP patient since birth. “They always make her feel like a superstar during her visits!”
Shai’s Story
Shai, 9, is kind, compassionate, thoughtful, funny, brave and nurturing, according to her mother, Brittany. Her sister Shai-Anna also has sickle cell disease. Shai has experienced some of the worst symptoms, including debilitating pain crises, a flu-like condition called acute chest syndrome, and a stroke. She has two ports in her chest to make it easier to receive full red-blood-cell exchanges every three weeks. Brittany praises the team at CHOP and the personalized care: “Our hematologist has been amazing at thinking outside the box to provide treatment based on Shai’s specific needs.”
Shai-Anna’s Story
Shai-Anna, 8, “makes us laugh every day and makes those around her feel better about themselves,” says her mother, Brittany. Her sister Shai also has sickle cell disease. Shai-Anna has faced many challenges because of the disease, and until recently had a significant fear of needles, which made the necessary frequent bloodwork very challenging. The family came to CHOP for a second opinion and stayed because of the high level of care, says Brittany: “We felt like the sickle cell clinic at CHOP was more comprehensive. We really appreciate the collaboration and the number of specialists she sees.”
2023 Ambassadors
Austin’s Story
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’s Story
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’s Story
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’s Story
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’s Story
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.
Julius’ Story
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’s Story
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’s Story
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.
Mason’s Story
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’s Story
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.
Sarah’s Story
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’s Story
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’s Story
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.
Zara’s Story
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’s Story
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’s Story
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.