2022 Ambassadors

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!

Ariyan’s Story

Ariyan7-month-old Ariyan was diagnosed with CHD in utero, during a routine prenatal ultrasound. She was two days old when she underwent her first surgery; her second took place in Feb. 2022. Ariyan’s dad, Raheem, says regular communication with Ariyan’s care team has been a huge support to their family throughout her treatment. Though he knows Aryian’s heart journey will continue through childhood, he hopes his happy, loving and playful daughter will have “a long, productive and active life with no limits.” The family is participating in Philly Spin-In to help bring awareness to pediatric heart disease.

Brielle’s Story

BrielleWhen Brielle was born, doctors heard a heart murmur, which led them to discover a ventricular septal defect (VSD), or hole in Brielle’s heart. Four months later, CHOP doctors patched the VSD. “There’s nothing scarier than knowing your baby is headed for open-heart surgery,” say Brielle’s parents. “But our daughter was in the best hands!” Brielle recovered quickly, growing from an underweight infant to an inquisitive 1-year-old who sits, crawls, pulls up and gives great cuddles! “We thank CHOP every day for repairing our daughter’s heart so she can grow and thrive,” say her parents.

Elias’s Story

EliasWhen 2-year-old Elias suffered a syncope caused by his severe pulmonary hypertension, he was placed on ECMO (a heart-lung bypass machine) and transported to CHOP for emergency care. Though Elias’s chance of survival seemed bleak, Dr. Katsuhide Maeda knew his best chance was a risky surgical procedure called Potts shunt, an open-heart operation that, if successful, could save the toddler’s life and delay the need for a future lung transplant. Elias’s surgery made him one of the very rare cases of a successful Potts shunt while on ECMO. “Nothing that could’ve gone wrong did,” says Elias’s mom, Johanna. “Dr. Maeda was an angel sent to heal our son.”

Emma’s Story

EmmaEmma was an infant when doctors in China discovered she had a ventricular septal defect, or hole between the lower chambers of her heart. After she was adopted, Emma was brought to CHOP for care and underwent a mitral valve replacement. “The nurses in the Cardiac Center were so great,” says Emma’s mom, Beth-Anne. “Her cardiologist is like a member of our family.” Now a bubbly 6-year-old, Emma is full of energy and loves ballet and tap dancing. When she grows up, she wants to be “a doctor for babies.”

Gabriel’s (“Gabo”) Story

GaboShortly before his 8th birthday, Gabriel (“Gabo”) suffered a sudden cardiac arrest and was medevacked from his local New Jersey hospital to CHOP, where he spent four days on an ECMO machine to keep him alive. Doctors placed an automatic implantable cardioverter-defibrillator to monitor Gabo’s heart rate and deliver a life-saving shock if needed. But over time, Gabo’s heart began to fail; he needed a heart transplant. Gabo received his new heart on Father’s Day 2021, making him CHOP’s 300th heart transplant patient! Six months later, the brave, thoughtful, 9-year-old performed in The Nutcracker.

Grayson’s Story

GraysonGrayson’s parents first participated in Philly Spin-In before he was born — so they could raise funds to support little hearts. Just months after their first Spin-In, they discovered they were pregnant, and 16 weeks later, Grayson was diagnosed in utero with transposition of the great arteries. In the last year, Grayson has undergone two open-heart surgeries and a cardiac catheterization. Says Grayson’s mom, Jennifer, “CHOP saved our baby and so many like him. Their work makes a difference every single day and participating in Philly Spin-In is a great way for us to pay it forward.”

Harper A.’s Story

Harper A.Harper’s heart journey began before she was even born when doctors diagnosed her CHD in utero and referred the family to CHOP. Just 2 years old, Harper has already undergone many surgeries and catheterizations, yet remains a determined, “bright light” who loves to dance, sing and make people laugh. “As a parent of a child with CHD, you feel so helpless at times because you can’t fix the problem or make it go away,” says Harper’s mom, Julie. “For me, the Philly Spin-In is something I can do to celebrate these incredible children and do my part to raise awareness and funds to support their futures.”

Harper S.’s Story

Harper S.Harper’s family describes the 3-year-old as “funny, outgoing, smart and sassy.” Diagnosed in utero with hypoplastic left heart syndrome, Harper’s come leaps and bounds, overcoming two open-heart procedures with the support of her family. Though having a child undergo surgery is frightening, Harper’s family was comforted by the loving care of her CHOP team. Harper’s family hopes her strength will continue to serve her well, and that she “never loses the fight she has.” For now, Harper is busy learning colors, shapes and numbers, as well as playing with her older sister.

Mackensie (“Kensie”) and Madison’s (“Madi”) Story

Kensie and MadiIdentical twins Mackensie and Madison were both diagnosed with tetralogy of Fallot (TOF) in utero. Born at 32 weeks, the twins had a TOF repair in their first few months of life and a pulmonary valve repair in 2021. Now 17, the girls are back to the sports they love: swimming for Kensie and gymnastics for Madi. Madi learned about Philly Spin-In last year, while in the hospital, and she says the idea of one day sharing her own success story encouraged her during recovery. “I want to show children at CHOP that they can get better, just like the people at last year’s Spin-In showed me.”

Monty’s story

Monty was diagnosed in utero with transposition of the great arteries, a complex condition in which the aorta and pulmonary artery are attached to the wrong sides of the heart. Monty underwent a lifesaving procedure shortly after birth, and then an arterial switch, an open-heart surgery to reconstruct the heart. Now 9 months old, Monty has started to crawl, pull himself up and climb stairs. An encouraging poster, hung on Monty’s crib at CHOP, now hangs on his bedroom door as a reminder of all this brave Heart Warrior has overcome.

Sara’s Story

19-year-old Sara believes in working hard and helping others. As an aspiring nurse, she hopes to give other children the same compassionate and advanced care she received as a patient in the Cardiac Center at CHOP. Sara was born with a pulmonary artery sling, a rare condition where the left pulmonary artery passes between the trachea and esophagus. CHOP surgeons reconstructed her trachea, relocated her pulmonary artery and repaired two ventricular septal defects (holes in the chambers of her heart). Now Sara is starting her first clinical rotation in nursing school.

Shane’s Story

At Shane’s 8-week checkup, his pediatrician noticed Shane was wheezing. Further testing showed Shane’s heart was enlarged. He was in heart failure and needed surgery immediately. At 10 weeks old, one day after his diagnosis of coarctation of the aorta, Shane underwent emergency surgery at CHOP. Now 8, Shane runs track and plays soccer and hopes to continue playing sports in college. “We will always be grateful to the CHOP team who worked to save Shane’s life. Thanks to them, the sky’s the limit for our son,” says his mom, Katelyn. Shane’s family is excited to participate in Philly Spin-In to support future lifesaving care for children like Shane.

Wyatt’s Story

Wyatt was diagnosed with hypoplastic left heart syndrome when he was still in his mother’s womb. Born in CHOP’s Special Delivery Unit for mothers carrying babies with known birth defects, Wyatt underwent his first open heart surgery at 3 days old and his second just five months later. This fall, this inquisitive and energetic Heart Warrior started preschool! 2022 will be Wyatt’s second year at Philly Spin-In. Say his parents, “We can’t wait to support the Cardiac Center’s amazing research and care that gives families like ours a bright future!” 

  • 2021 Ambassadors

    Aleena’s Story

    AleenaIn 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.

    Connor’s Story

    ConnorStrength 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’s Story

    CoraCora 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’s Story

    LaurenLauren 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’s Story

    MackenzieMackenzie, 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 LuizMartin 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.”

    Morgan’s Story

    MorganIf 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.”

    Olivia’s Story

    OliviaWhen 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’ Story

    StephanosStephanos’ 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.

    Tenlee’s Story

    Tenlee“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

    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

    ZacharyAt 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

    Amelia’s Story

    AmeliaBefore 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’s Story

    AnnieAnnie 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.

    Beckett’s Story

    BeckettDiagnosed 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’s Story

    CherishCherish, 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.

    Evelyn’s Story

    EvelynBefore 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.

    Hudson’s Story

    HudsonBorn 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.

    Matt’s Story

    MattSoon 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’s Story

    NicoNico 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’s Story

    PhoebePhoebe 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.

    Samad’s Story

    SamadAt 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.

    Sophie’s Story

    SophieCHOP’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
    Erin    

     

    Erin

    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.

    Hailee    

     

    Hailee

    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.

    Hudson    

     

    Hudson

    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.

    Jackson    

     

    Jackson

    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    

     

    Lily

    Lily underwent several surgeries at CHOP’s Cardiac Center to treat her HLHS. Now she’s dancing ballet and contemporary.

    Matt    

     

    Matthew B.

    Born with a backward heart on the wrong side of his body, Matthew received a heart transplant and is now thriving.

    Matt    

     

    Matthew H.

    Since having innovative treatment for plastic bronchitis, Matthew, 10, is planning a bright future — he hopes one day to become a doctor.

    Naadir    

     

    Naadir

    After four months on a ventricular assist device, 13-year-old Naadir received a heart transplant at CHOP and is recovering well.

    Nadia    

     

    Nadia

    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.

    Siena    

     

    Siena

    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    

     

    Beyah

    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    

     

    Christopher

    Christopher had heart surgery to correct his coarctation of the aorta when he was just 6 months old. Today, he’s enjoying kindergarten.

    Finn    

     

    Finn

    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.

    Katie    

     

    Katie

    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.

    Olivia    

     

    Olivia

    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.