Our inspiring patients are the reason Philly Spin-In was created and why we continue to strive to create breakthroughs for every child in our care. All donations to Philly Spin-In power cardiac research and care at Children’s Hospital of Philadelphia (CHOP).
Thank you for helping our heart warriors!
In Jan. 2021, Aleena and her family received the news they’d been waiting for: CHOP’s transplant team had a new heart for Aleena. Born with a rare heart defect called Ebstein’s anomaly of the tricuspid valve, Aleena had already undergone multiple open-heart surgeries and even more transcatheter interventions. Now 11, this “sassy firecracker” grows stronger every day and looks forward to pursuing her future aspiration — to perform on a big stage.
Strength and fearlessness — that’s what Connor’s parents wish for their energetic 2-year-old as he grows up. Diagnosed with hypoplastic left heart syndrome, Connor has already faced more health challenges than many adults. For now, this happy toddler is busy running, jumping and perfecting his dance moves. His parents are grateful for the care they received at CHOP and for Connor’s surgeon Dr. Jonathan Chen — so much so that Jonathan is Connor’s middle name! They look forward to participating in Philly Spin-In to increase CHD awareness for CHOP heart warriors like Connor.
Cora was diagnosed prenatally with aortic valve stenosis and underwent open-heart surgery shortly after she was born. At 5 weeks old, she went into heart failure, and CHOP doctors saved her life through an innovative transcatheter procedure. Now a spunky and happy toddler, Cora just celebrated her second birthday! She loves playing with her big sister and sneaking her older brother’s toys. Her parents look forward to joining the cardiac community at Philly Spin-In in support of little hearts like Cora’s.
Lauren loves walking in the rain and splashing in the ocean with her friends. Until a year ago, she wasn’t able to participate in activities like this without experiencing chest pain, difficulty breathing and coughing up casts. At 18, Lauren was diagnosed with plastic bronchitis and treated in CHOP’s Jill and Mark Fishman Center for Lymphatic Disorders — the first center of its kind to diagnosis and treat complex lymphatic conditions. Now 20, Lauren breathes freely and just completed her second year at college.
Mackenzie, 10, is described by her parents as “our sunshine — with a little bit of hurricane mixed in. She knows how to push through the hard.” Two days after Mackenzie was born, her doctor discovered a heart murmur, which ultimately lead to a diagnosis of critical aortic stenosis and hypoplastic left heart syndrome. Mackenzie’s strength served her well through multiple procedures and three open-heart surgeries. Now thriving, Mackenzie’s taking on math and her new favorite sport: softball!
Martin Luiz’s Story
Martin Luiz was only 6 days old when he underwent the first of three open-heart surgeries needed to treat acute hypoplastic left heart syndrome, a severe congenital heart defect. Now 6 months, Martin Luiz is a happy baby who loves being outside and playing with his big brothers. His parents credit his health to CHOP’s first-class medical care and compassionate culture. The family is participating in Philly Spin-In “to say thank you for saving our son’s life.”
If you watched 18-year-old Morgan play ice hockey at the University of Delaware, you’d never know she has a congenital heart defect. Diagnosed prenatally, Morgan’s had three open-heart surgeries and multiple procedures at CHOP to treat hypoplastic left heart syndrome. Having graduated high school in the top of her class, Morgan plans to pursue a career in civil engineering. Say her parents, “We believe Morgan represents all that is possible in life despite having health challenges.”
When Olivia was born, doctors discovered a heart murmur; at 5 months, she was diagnosed with mitral valve stenosis and a dilated left ventricle. In 2019, Olivia received a valve replacement at CHOP. With the help of physical therapy, Olivia — now 2 — is able to crawl and learning to stand on her own. Her parents look forward to the day when Olivia will be able to run and play with her twin sister, Isabela, and 3-year-old sister, Camila.
Stephanos’ medical journey began before he was born. Diagnosed prenatally with hypoplastic left heart syndrome, Stephanos needed advanced cardiac care, including three open-heart surgeries. “We knew CHOP would be the best place to tackle his condition,” say his parents. Now 3 1/2, Stephanos loves playing with his little sister and wants to become a golfer. His parents hope his medical journey will raise awareness that supports future generations of children with CHD.
“Nothing prepares you,” says Tenlee’s mom, remembering the family’s medical journey, which began before Tenlee was born. Ultimately diagnosed with an unbalanced AV canal, Tenlee needed a heart transplant, which she miraculously received at just 5 months old. Now 2, Tenlee spends every moment she can with her older sister and baby brother. Says her mom, “We’re participating in Philly Spin-In to give back to the place that gave my daughter another chance at life.”
Zachary M’s Story
Zachary was diagnosed with hypoplastic right heart syndrome — a congenital heart defect in which the right-sided heart structures are underdeveloped or unformed — while still in his mother’s womb. At CHOP, this inquisitive and energetic little boy has received four open-heart surgeries and more than 20 cardiac catherization procedures. Now 5, Zachary recently began playing T-ball and looks forward to starting kindergarten this fall. He loves superheroes, playing outside and spending time with his 2-year-old sister.
Zachary R’s Story
At 3 1/2, Zachary was diagnosed with Kawasaki disease, a rare inflammatory syndrome affecting the body’s blood vessels and coronary arteries. Zachary suffered multiple coronary aneurysms, ultimately leading to heart failure. In July 2020, Zachary — now 5 — finally received his new heart. “Because of the care we received at CHOP and the kindness of a stranger that said ‘yes’ to organ donation, our family was given a second chance,” say his parents.
- 2020 Ambassadors
Before Amelia was born she was diagnosed with pulmonary arterial venous fistula, a rare and potentially deadly heart defect. She would need specialized care before, during and immediately after birth. Doctors at CHOP performed a C-section delivery, and within minutes of birth, Amelia underwent a cutting-edge cardiac catheterization procedure to place an expanding metal plug in her heart to correct the blood flow to her heart and lungs. Today, Amelia is a happy and healthy 1-year-old.
Annie was only four days old when she was transported from Arkansas to CHOP for a series of life-saving surgeries to treat hypoplastic left heart syndrome. Doctors told her family that Annie’s condition was dire — she was essentially missing one side of her heart — but that there was hope thanks to the experience and expertise at CHOP. After returning to Philadelphia multiple times for surgery, Annie’s family decided to move to Pennsylvania to ensure she would always have access to world-renown heart care. Today, Annie is a happy kindergartener who loves dance class and hopes to become a “baby doctor” like the ones who saved her life.
Diagnosed with hypoplastic left heart syndrome before he was even born, Beckett underwent three open heart surgeries: when he was 13 hours old, at 5 months old, and at 3 years old. Now 6 years old, Beckett’s ongoing treatment includes daily medication and regular visits to CHOP’s Cardiac Center. His parents will monitor his condition throughout his life and trust that advancements in medicine and technology at CHOP will meet his changing needs as he grows up. Beckett loves to draw, plays the ukulele and is a huge fan of Toy Story.
Cherish, 14, had been struggling with debilitating fatigue for weeks when her family brought her to CHOP. Doctors diagnosed her with severe heart failure caused by dilated cardiomyopathy, a serious condition where the muscle in the heart becomes abnormally thick and enlarged, affecting her body’s ability to pump blood and maintain its rhythm. To help immediately, CHOP doctors implanted a left ventricular assist device (LVAD) to keep her alive until a donor heart was available. Nine months later, Cherish received a heart transplant and began her complete recovery. Today, Cherish is enjoying high school, playing basketball again and looks forward to attending college.
Before Evelyn was even born, doctors knew there was a problem with her heart. Prenatally diagnosed with aortic atresia, Evelyn’s chances for survival were slim. Her parents decided to temporarily move from Colorado to Philadelphia for the advanced delivery care and special cardiac support their baby (and her twin) would receive at CHOP. The twins were born two months early, and Evelyn remained in the cardiac ICU until she was large enough for surgery to successfully repair the severe aortic arch hypoplasia and ventricular septal defect. Evelyn will eventually need her heart conduit — and possibly the valve — replaced but, for today, she is a happy and talkative 3-year-old.
Born with an atrial septal defect, Hudson received life-saving surgery at CHOP when he was nearly a year old to fix the “hole” in the upper chamber of his heart. Now 7, Hudson has recovered completely and only returns to CHOP for an annual check-up. He’s an avid painter, talented ukulele player, and huge fan of superheroes. His parents credit his recovery to the talented team at CHOP’s Cardiac Center.
Soon after he was born in New Mexico, Matt was diagnosed with tetralogy of Fallot, a serious heart defect. He would need complex surgery. His parents reached out to a family member who worked at Children’s Hospital of Philadelphia (CHOP) and discovered the hospital had cardiac experts who could help. Matt and his family came to Philadelphia to meet with CHOP doctors. Soon after, Matt underwent open-heart surgery to patch the abnormal opening between the bottom two chambers of his heart and expand his pulmonary valve. Today, Matt is a thriving 16-year-old who plays lacrosse, races bikes and hopes to become an engineer.
Nico was still growing in his mother’s womb when doctors discovered a massive hole in his heart and multiple defects in his aorta — blocking blood to the rest of his body. Two days after he was born, he was successfully treated at CHOP with open-heart surgery. Today, he’s a thriving little boy who’s hitting his developmental milestones, enjoys roughhousing with his “dada” and playing with his mom and sister. Though only 10 months old, Nico is a huge Philadelphia Eagles football fan and smiles every time he hears the team’s fight song. Nico’s parents are in awe of their “miracle” baby and eternally grateful to the team at CHOP, who have become their second family.
Phoebe has never let her heart condition hold her back. Born with hypoplastic left heart syndrome, Phoebe underwent a series of reconstructive heart surgeries in her first three years. But instead of focusing on her limitations, Phoebe’s family encouraged her to focus on what she could do — bike, hike, play sports, study and live her fullest life. Now 17, Phoebe is looking forward to playing Division 1 lacrosse next fall at Fairfield University in Connecticut. As she enters adulthood, Phoebe says she’s glad she can keep her connection to CHOP through the Single Ventricle Survivorship Program.
At two days old, Samad went into cardiac arrest four times. Though his heart was structurally normal, doctors discovered he had long QT syndrome, a rare genetic heart condition that disrupts the electrical signals in the heart. After Samad was treated with an implantable cardioverter defibrillator to regulate his heart rhythm, his family underwent genetic testing and discovered they too had the condition and were at risk of sudden cardiac arrest. The entire family now receives regular heart monitoring and is treated as needed.
CHOP’s Cardiac Center has been an important part of Sophie’s family since the day she and her twin sister, Phoebe, were born. Both girls were treated as infants for different congenital heart defects. Sophie had surgery first — 24 hours after birth — to repair her ventricular septal heart defect and has been medically followed by CHOP ever since. Sophie is a natural athlete and says she never felt limited by her heart condition – it just made her more determined. After years of playing competitive sports, Sophie was recruited to join the University of Notre Dame’s Division 1 lacrosse team in Fall 2020.
- 2019 Ambassadors
To 23-year-old Erin, her numerous scars are powerful reminders of all she’s overcome since being diagnosed with congenital heart disease as a baby.
Not much stops Hailee — at least not for long. She’s had three open-heart surgeries and had a pacemaker implanted — all by the age of 5.
Born with congenital heart disease and later developing heart failure, Hudson needed a heart transplant to survive. Today, the 5-year-old is running circles around his parents.
Two years ago, Jackson needed life support when he caught an extremely rare, life-threatening condition. Today, he’s an active teenager who excels at golf.
Lily underwent several surgeries at CHOP’s Cardiac Center to treat her HLHS. Now she’s dancing ballet and contemporary.
Born with a backward heart on the wrong side of his body, Matthew received a heart transplant and is now thriving.
Since having innovative treatment for plastic bronchitis, Matthew, 10, is planning a bright future — he hopes one day to become a doctor.
After four months on a ventricular assist device, 13-year-old Naadir received a heart transplant at CHOP and is recovering well.
Born with a heart defect, Nadia received surgery at CHOP in 2017. She is now an active 3-year-old who loves dancing and playing soccer.
Born with holes in her heart, Siena overcame many challenges during her first year. After treatment at CHOP, she’s back home and reaching new milestones.
- 2018 Ambassadors
Beyah, 2, has come a long way since having lifesaving open heart surgery at Children’s Hospital of Philadelphia when she was just a few days old.
Christopher had heart surgery to correct his coarctation of the aorta when he was just 6 months old. Today, he’s enjoying kindergarten.
Finn, 3, loves to run, dance and climb the stairs. Watching the active toddler, you would never guess he was born with serious heart defects.
At 12 years old, Katie has overcome many of her own health-related obstacles and faces more in the years ahead. She has the support of her family and her medical team at CHOP.
When Olivia was just 4 days old, she had open heart surgery to repair her coarctation of the aorta, a congenital heart disease. Today, she’s a happy and active 3-year-old who loves to dance, sing, and play with her brothers.