When we adopted our sons, Samson and Aiden, in 2013 and 2016, we thought adoption might be the biggest change in our family’s life. It turns out, the biggest life change for our family of six came in the summer of 2016 when we combined a few doctor appointments with a family trip. Since Aiden's adoption, we searched for a medical care team that understood his disability, arthrogryposis multiplex congenita (AMC) — a congenital condition characterized by multiple joint contractures present at birth, often causing stiffness and limited mobility in multiple areas of the body. We started with our local children's hospital in Michigan and then traveled to Chicago and Detroit, trying to find doctors and therapists that would see our son as not just a diagnosis, but a two-year-old with lots of potential. Ultimately, we discovered Nemours Children's Hospital and before we knew it, we had appointments set up for July 2016. We even had a personal call from a physical therapist who knows AMC inside and out. Our family was blown away by the difference in care before we even walked through the door. 

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At just 8 days old, Dylan was diagnosed with coarctation of the aorta – a congenital heart defect where the aorta, the main artery carrying blood from the heart, narrows, causing blood flow obstruction - and ventricular septal defect (VSD) – a birth defect where a hole exists in the wall separating the two lower chambers of the heart. Things escalated quickly as he was rushed by ambulance from his pediatrician to Nemours Children’s Hospital where we were devastated to learn the severity of his situation. However, Nemours Children’s had everything, the facility, medicines, and entire staff that we needed to make us feel that we were in the best place for Dylan to receive the care he so desperately needed.

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Landon was born in April 2006 in Jacksonville, Florida. At just two months old, Nemours Children’s Audiology & ENT in Jacksonville, Florida diagnosed Landon with bilateral hearing loss – the reduction of hearing in both ears, affecting the ability to understand speech and other sounds. By three months, Landon was fitted with hearing aids, but even then, we sensed there was more to his story. His pediatrician, Enrique Silva, MD was there for us from day one reminding us that there might not be answers right now, but that he would do everything he could to help lead us in the right direction and give Landon the best care.

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Anyone watching Meara competing in basketball, softball or golf would likely be surprised to learn that she has chronic kidney disease. A fierce competitor, she was diagnosed as a newborn and had her first surgery at nine months old.

Meara’s medical journey began at 3 months when she started having 104- to 105-degree fevers. At her community hospital, tests determined that her kidneys looked enlarged and could be the source of her temperatures. After they treated her infection with antibiotics and other medications, the local team referred her to a children’s hospital in Philadelphia, where she was diagnosed with chronic kidney disease and a horseshoe kidney (this happens when the kidneys are fused together like a horseshoe), followed by a seven-hour surgery to remove a ureteropelvic junction obstruction.

“To this day, we are beyond appreciative of her wonderful surgeon in Philadelphia,” says her mom, Clare.

Clare remembers many appointments and unplanned hospital visits to manage Meara’s condition and gratitude when things stabilized. But she also recalls frustration with her daughter’s care team.

“It was hard to get any questions that I had answered in between appointments. And when we were with her doctor, I felt they were rushed and distracted,” Clare says.

When Meara was 3 years old, Clare was attending a National Kidney Foundation event where she met “Dr. JJ” (Joshua J. Zaritsky, MD, PhD). Clare expressed her concerns about Meara’s care, and Dr. JJ invited her to visit Nemours. The next day, his assistant called to get them on Dr. JJ’s schedule.

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Shortly after Victoria was born, we learned that she had Sickle cell disease SS – a severe genetic blood disorder where red blood cells become sickle-shaped and sticky which causes problems with blood flow, leading to pain. From that moment, our journey with Sickle cell began—one filled with challenges, strength, support and hope.

Victoria has received all her care through Nemours Children’s Health in Wilmington, Delaware. Her pediatrician, hematologist and several specialists work together as a team to care for her physical and emotional well-being. Due to this full-scope approach, we feel like we are doing more than managing a condition. We are helping Victoria thrive.

Thanks to Nemours Children’s, Victoria attended a special medical camp for children with serious illnesses where she has developed deep, lasting friendships with kids with similar experiences. We are incredibly grateful for Victoria’s ability to make those connections.

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The Vyvyan family’s journey at Nemours Children’s began when their daughter Ingrid, the second of their three children – Lewis, Ingrid, and Wells – was born with hearing loss. While navigating this new reality was challenging at first, the Vyvyan family found hope and optimism thanks to the wonderful support from Nemours Children’s Hospital, Delaware and the community in Delaware. The Vyvyans learned American Sign Language (ASL) and Ingrid was fitted with hearing aids, which has truly empowered her.

When their youngest child, Wells, was born profoundly deaf, the Vyvyans embarked on a new journey – one that led to his eligibility for cochlear implants. The care and dedication of their pediatric otolaryngologist, William J. Parkes, MD, and the Nemours Children’s team has been invaluable.

Today, Lewis, Ingrid and Wells are thriving. They have access to both spoken language and ASL and the Vyvyan family is grateful for the amazing care and opportunities that their children have received. Ingrid and Wells, in particular, have flourished. They are bright, imaginative, and curious about everything. The Vyvyans are excited for what lies ahead, with the continued support from Nemours Children’s.