the Cover: Diagnosed in utero, the effects of Joshua’s spinal muscular atrophy (SMA) type 1 became apparent when he was 11 months old.
From the Desk of James P. Digan
Dear Friends and Supporters,
This edition of In the Loop describes our progress over the last few months and your impact on the millions of children and families we serve each year.
In the following pages, you will see moving stories like those of Lexi and Joshua, who found hope and healing through care delivered by expert physicians. You will learn about research into a game-changing therapy for difficult-to-treat cancers and the transformational philanthropy making it possible.
We also celebrate the lives of Marilyn “Lynn” and Dr. G. Dean MacEwen, who passed away in August, just days apart from one another. Dr. MacEwen was a pioneer in the field of pediatric orthopedic surgery and spearheaded our evolution into the leading health system we are today. I hope you take the time to read about the MacEwens’ remarkable life together and enduring legacy at Nemours Children’s.
In our next issue of In the Loop, we’ll introduce you to another incredible family. They were on a Florida beach in January 2022 when their 3-year-old son Jack’s heart stopped. In June, you’ll learn that Jack has completely recovered thanks to the critical care transport and specialty care he received from our Nemours Children’s teams. His parents, Lawrence and Lucy, are profoundly grateful and have helped ensure other families in Florida’s 67 counties have access to the care that saved Jack.
Once again, thank you for your friendship and the many ways you show support for Nemours Children’s. I send my best wishes for a joyful and restful holiday season and hope to see you in the new year!
With respect and gratitude,
James P. Digan President, Nemours Children’s Health Alliance
Ringing the Bell Twice
Lexi’s Story
One night in 2017, Rebecca felt a lump on her 3-year-old daughter’s right side during bath time.
Lexi seemed fine, but doctors in their local emergency room sent them north 67 miles to Nemours Children’s that night. Tests revealed a terrifying diagnosis: Lexi had Wilms tumor, a cancer of the kidneys.
The first steps on the road to health included surgery to remove her right kidney, followed by four months of chemotherapy. The treatment went according to plan. After Lexi was declared cancer-free, they rang the bell to signal the end of her treatment.
Unfortunately, a year later, during her January 2019 three-month checkup, it was clear the cancer had returned. Rebecca remembers her shock and the measure of comfort she felt when Lexi’s caregivers said the recurrence was treatable.
“I thought about us going through it all again. At 3, she was less aware of what was happening. When the cancer returned, Lexi was 5,” says Rebecca. “I was concerned that she would be traumatized the second time around.”
Once again, the treatment plan began with surgery. After a part of her left kidney was removed, chemotherapy began. And then, much to her family’s relief and gratitude, Lexi got to ring the bell again.
Lexi, now 10, doesn’t talk much about her cancer, although she has follow-up appointments every six months. She remembers dancing to the music therapist’s tunes and pretending to play instruments herself.
Today, she takes lessons and plays the piano.
Lexi loves math and helping other students who need a hand with numbers. She reads a lot; she’s smart and quick to understand things.
As she considers all they’ve been through during her daughter’s young life, Rebecca returns to various versions of the same thought. “I could not be more grateful to all of the incredible staff who cared for Lexi,” says Rebecca. “The hospital is amazing!”
Lexi survived cancer twice with the help of her Nemours Children’s care team.
A New Little Man
Joshua’s Story
For the first few years of his life, Joshua’s type 1 spinal muscular atrophy (SMA) created constant medical challenges for his family.
The number one genetic cause of infant mortality, the condition is both neurological and muscular because nerve cells in the spinal cord and brainstem do not work correctly.
“Joshua wore a back brace for 4.5 years, with breaks only for bathing,” recalls his grandmother, Claudia. The brace managed his scoliosis, but it made sitting up uncomfortable and exacerbated respiratory issues common in children with SMA.
“Every cold or flu he caught turned into a hospital stay and sometimes intubation,” says Claudia. “SMA can cause respiratory distress, but the fact that Joshua’s lungs were restricted from growth because of scoliosis made it so much worse.”
When his pulmonologist in Miami recommended an orthopedic specialist at Nemours Children’s Hospital in Orlando, the family soon recognized that his new care and treatment would dramatically impact his life.
Joshua’s dedicated care team — led by John F. Lovejoy, MD — advised the family that halo traction and rod placement surgery would give him the best possible outcomes.
The results of Joshua’s surgeries were remarkable.
“Recovery has gone well, and Joshua looks like a new little man,” Claudia shares. Joshua’s breathing has improved significantly, and he has avoided hospital stays despite a few colds.
“Dr. Lovejoy and his staff are always professional, kind beyond words, and attentive to Joshua’s needs. They make time to answer questions and explain each step in the process,” says Claudia. “They show him kindness, compassion, and most of all, love.”
At age 6, Joshua faces more surgeries to replace rods and, eventually, spinal fusion. “We are happy for his progress and the benefits he has gained,” shares Claudia. “Mainly, we feel blessed to be in the hands of Dr. Lovejoy and the team at Nemours Children’s Orthopedic Department.”
Pictured in the Inpatient Rehabilitation Unit (from left) Patient Care Technician Shelbie McLeod, Joshua and Nurse Laura Pfeffer.
Creating “Sounds of Hope”
To accommodate skyrocketing population growth in Northeast Florida, clinics in our downtown Jacksonville multispecialty care center are undergoing major renovations.
One of these spaces houses our Division of Otolaryngology, which delivers critical diagnostic and treatment services for children with ear, nose and throat (ENT) disorders.
After more than 30 years, the division’s clinic is running out of space and needs new equipment to facilitate care that helps children breathe, eat, hear, move and speak.
Our Sounds of Hope campaign aims to galvanize community support for a reimagined Center for Otolaryngology at Nemours Children’s Health, Jacksonville. The center enhances our capacity to treat patients, research new therapies for ENT disorders, and train tomorrow’s otolaryngology leaders.
Sounds of Hope builds on our successful Hand in Hand campaign, a recently completed $11.3 million fundraising effort. That campaign created THE PLAYERS Center for Cancer and Blood Disorders housing the Eckstein Family Infusion Suite, revolutionizing care for First Coast children.
The Jack C. & Betty A. Demetree Foundation, one of Jacksonville’s leading philanthropic institutions, recently made a gift of $2 million to support Sounds of Hope. Generous partners like the Demetree Foundation and family are vital to our ability to meet the region’s need for care that is crucial to children’s healthy development.
“We are honored to support the new ENT center, which will offer children access to state-of-the-art technology and exceptional physician care,” says Lisa Demetree, director of the Demetree Foundation.
Born unable to hear, Rose received bilateral cochlear implants at Nemours Children’s. Today, she loves anything that rattles and makes noise! Recounting the moment he realized his daughter could hear, Rose’s dad, Ritchie, said, “We will never forget that as long as we live. It was one of our happiest moments as a young family.”
ENT disorders are some of the most common health problems kids face. In fact, they’re the primary reason for a child to visit a doctor, accounting for about 30 million pediatrician appointments each year.
“Otolaryngology is our second busiest service line in Jacksonville,” says Robert Sprecher, MD, chief of the Division of Otolaryngology. “We see everything from breathing and swallowing problems to balance disorders and hearing loss.”
If ENT disorders are not addressed early, they can lead to serious health complications and difficulties communicating. Hearing loss, in particular, must be diagnosed and treated as soon as possible to prevent children from developing learning and emotional challenges as they grow up.
With the largest cochlear implant program in the region, the division cares for more children with hearing loss and related disorders than anyone else in Northeast Florida. Health systems from as far away as Central Georgia refer children to us for diagnostic and treatment services available nowhere else. Nemours Children’s is also the largest ENT treatment provider for children on Medicaid in Jacksonville, making us a key resource for families with few options for specialty care.
The name Sounds of Hope was given to our ENT campaign because of the many ways it represents better health for children and families. Through the incredible support of donors like the Demetree Foundation, we are well on our way to ensuring Sounds of Hope ring out across Jacksonville and beyond.
Celebrating a Pioneering Nemours Children’s Family
G. Dean MacEwen, MD, a revered trailblazer in pediatric orthopedic surgery, passed away on August 6, 2024, at 96.
His beloved wife, Marilyn “Lynn” Heidelberger MacEwen, joined him in peaceful rest just 12 days later, on August 18, 2024. Theirs was a journey of love and shared dedication, spanning 70 years of marriage.
Lynn, born January 1, 1931, and raised in Seaford, New York, graduated from Cornell University with a degree in home economics in 1952 and remained an active alumna of the Kappa Alpha Theta sorority throughout her life. In 1953, she graduated from Columbia University with a degree in occupational therapy and went to work in Washington, D.C. at the District of Columbia General Hospital.
Dr. MacEwen earned his medical degree at Queen’s University in Kingston, Ontario. He moved to Washington, D.C. for an internship in surgery at the District of Columbia General Hospital, where he met his wife-to-be, Marilyn, on a blind date.
The two were married in 1954. During a two-year stay in Memphis, Tennessee, Dr. MacEwen was a resident in orthopedic surgery at the Campbell Clinic.
Dr. MacEwen was recruited by Alfred Shands, MD, the first medical director of the Alfred I. duPont Institute of the Nemours Foundation. In 1958, Dr. and Mrs. MacEwen moved to Wilmington, Delaware, where they raised their family. Dr. MacEwen became the first surgeonin-chief and, ultimately in 1969, was named the second medical director of the Alfred I. duPont Institute (now known as Nemours Children’s Hospital, Delaware).
Dr. MacEwen’s professional legacy is a towering presence in pediatric orthopedic surgery. His contributions during his 65-year career have left an indelible mark, influencing countless surgeons and shaping the field. In 1995, fully one-third of Pediatric Orthopaedic Society of North America members were Dr. MacEwen’s direct trainees or physicians who enjoyed a close connection to him.
A 2005 tribute noted that “[t]he great work that is being done by his numerous fellows all over the globe is a true measure of his contribution to the spread of pediatric orthopedics. [Dr. MacEwen] was not of an age but for all time.”
At Nemours Children’s, Dr. MacEwen will be remembered for many accomplishments, none more significant than his determined efforts to broaden the Institute’s scope of care to include conditions, diseases and injuries children suffer that extend beyond orthopedics. His singular vision led to the establishment of what is now known as Nemours Children’s Health, which includes two award-winning hospitals (one each in Delaware and Florida) and more than 70 primary, specialty and urgent care locations.
Over the years, Lynn was an avid volunteer, providing vision screenings for young children at Heads Up, volunteering as a guide at Winterthur, and serving on various committees at Concord Presbyterian Church. Together, Lynn and Dean loved international travel, antiquing and spending time at their vacation home at Lake Naomi, Pennsylvania.
The MacEwens are survived by their five children: Kathy MacEwen (Charles), Jane Barton (Rick), Nancy Hartigan (Larry), David MacEwen (Jenny) and John MacEwen (Elise), nine grandchildren, and nine great-grandchildren.
The family has requested that donations in their parents’ memory be made to the Dr. G. Dean and Mrs. Marilyn MacEwen Educational Fund at Nemours Children’s Health, created by the family to continue Dr. MacEwen’s legacy for educating future generations of leaders in pediatric orthopedic surgery nationally and worldwide. Gifts may be made online at nemours.org/macewen or by check mailed to Nemours Children’s Health Alliance, Shands House, 1600 Rockland Road, Wilmington, DE 19803.
Marilyn and G. Dean MacEwen
The RECOVER Study and our New CRU
Skyla’s Story
Nemours Children’s Hospital, Delaware celebrated the grand opening of its first clinical research unit (CRU) in July.
The outpatient space and infrastructure will significantly expand our ability to perform clinical research by providing researchers with access to state-of-the-art equipment and medical assistant staffing.
Clinical trials provide the reliable evidence needed to assess therapies that diagnose, prevent, treat and sometimes even cure childhood diseases.
At Nemours Children’s, over 200 clinical trials are being conducted in conditions that span every clinical department in the hospital, from oncology to endocrinology and behavioral health.
Pictured in the new Delaware CRU (from left) Skyla, her mom Ashley and Dr. Judith Ross.
CRU Director Judith Ross, MD, is a professor at the Sidney Kimmel Medical College, Thomas Jefferson University, with over 25 years of National Institutes of Health (NIH)-funded pediatric clinical research. Dr. Ross is a highly respected genetics provider, pediatric endocrinologist and researcher at Nemours Children’s. Her extensive knowledge, experience and leadership skills uniquely qualify her to oversee our CRU.
Thao-Ly Phan-Vo, MD, serves as chair of the Nemours Children’s CRU Scientific Review Council, which reviews studies to ensure they are aligned with the CRU’s purpose.
Skyla was the first patient to be seen in the CRU. Her infection was mainly asymptomatic after a positive COVID-19 test in April 2021. But by July, the 13-year-old was suffering periods of unceasing extreme dizziness. A few months passed, and she began to fall frequently, recalls her mother, Ashley. Skyla, who struggled with anxiety, was also sleeping up to 19 hours a day and experiencing pseudo-seizures.
Initially, Skyla was studied for several conditions, including autism, epilepsy and cardiac issues. All the while, additional warning signs arose, including temporary paralysis throughout her body. One of the countless tests identified a functional neurological disorder because of problems with how her brain receives and sends information to her body.
“It was scary,” says Ashley. “Her symptoms were all over the place. We were constantly looking for information, answers and treatment.”
During her diagnostic journey, Skyla’s care team began to explore a diagnosis of long-term COVID-19 (LC), an infection-associated chronic condition that has been present for at least three months after the infection.
LC is a progressive, relapsing disease affecting one or more organ systems. No definitive laboratory test exists to confirm the diagnosis of LC, with as many as 200 associated symptoms. LC can also exacerbate existing illnesses.
To help other kids and families facing undiagnosed symptoms related to LC, Skyla is participating in RECOVER-Pediatrics, a global study with a site at Nemours Children’s.
In a paper published in the August 21, 2024 issue of the Journal of the American Medical Association, 14 LC symptoms were identified in those ages 6–17 among 5,367 children in the RECOVER study.
Nemours Children’s has been a critical site in RECOVER, enrolling over 200 families. Our participation stems from our role as a site in the IDeA States Pediatric Clinical Trials Network, a nationwide network funded by the NIH dedicated to bringing clinical trials to children from underserved communities.
Skyla’s 24-month follow-up RECOVER appointment was the first to be held in the CRU.
“The CRU is beautiful and so convenient,” says Ashley. “Our previous study visits had us trekking all over the hospital.”
Now 16, Skyla is busy at school and coaches kids in gymnastics classes.
To learn more about our CRU, including how you can support these vital efforts or any of the programs featured in this issue, please contact: Senior Vice President, Philanthropy, Kevin Carraccio, at kevin.carraccio@nemours.org or 267.847.2097.
Highmark Foundation and Our Medical-Legal Partnership
Imagine having trouble paying your rent as a single parent returning to school to further your career.
One Nemours Children’s parent faced this scenario, and an eviction hearing was scheduled in short order. At an appointment for their child, the parent completed one of 54,000 routine social needs assessments we conduct each year indicating they were in jeopardy of losing their apartment.
Their openness about the eviction hearing led to a referral to our Medical-Legal Partnership, a program made possible through a generous investment from Highmark Blue Cross Blue Shield Delaware’s, Highmark Blueprints for the Community.
Assistance from civil legal aid attorneys for the patient family above helped determine that their eviction notice and portions of their lease did not follow the local landlord/tenant code, and the case was dismissed, allowing the parent to maintain their housing.
“Highmark is proud to support this effort in recognition of the growing understanding of the value of medical-legal cooperation,” said Nick Moriello, president, Highmark Blue Cross Blue Shield Delaware.
“Such teamwork not only improves patients’ health but can reduce homelessness, missed days of work and school, and the high costs of emergency room visits.”
The partnership involves a clinical team provider such as a physician or social worker recognizing a health-harming legal need, one of many social drivers of health (SDoH), nonmedical factors that account for 80% of a child’s overall health outcomes.
Negative SDoH, like food or housing insecurity, lack of access to education, economic instability, unsafe neighborhoods, and polluted water contribute to health disparities. Addressing these legal needs for underserved families is part of Nemours Children’s commitment to providing world-class care that goes well beyond medicine.
“Nemours Children’s Health is pleased to engage in this novel community partnership to help address the complex health and social needs of our most underrepresented patients,” says Abby Nerlinger, MD, MPH. “The pediatric Medical-Legal Partnership model aligns with efforts across Nemours Children’s to improve health equity and create healthier futures for all children and families.”
Photo credit: Getty Images
Pass It On To Kids Foundation
Nemours Children’s Health recently celebrated a transformational $7 million contribution from the Pass It On To Kids Foundation.
The gift will help further the groundbreaking research of Kenneth Alexander, MD, PhD, division chief, Infectious Diseases, and Tamarah Westmoreland, MD, PhD, associate professor of surgery and their teams as they harness the Zika virus to target and eradicate neuroblastoma and ovarian cancers.
“This significant donation will enable us to advance critical, promising research that could provide novel treatment options for hardto-treat cancers in the future,” says Matthew M. Davis, MD, MAPP, executive vice president, enterprise physician-in-chief and chief scientific officer of Nemours Children’s Health.
This gift also supports the Child Life department’s music therapy program at Nemours Children’s Hospital, Florida, which gives children and their families a safe, nonverbal way to communicate emotions, concerns, anxiety and stressors through shared musical experiences.
Pass It On To Kids Foundation has quickly become one of the most significant contributors to pediatric health in Central Florida with more than $13.4 million committed to Nemours Children’s, Florida in the past five years.
The foundation has also supported a wide range of family-centered programs and innovative research studies for eosinophilic esophagitis — an allergic inflammatory condition of the esophagus. Their support has led to significant public education and successful national policy advocacy efforts for children living with this disease.
“The DNA of Nemours Children’s Health is different,” says the foundation’s spokesperson. “Pass It On To Kids Foundation is excited to support the legacy of generosity of Alfred I. and Jessie Ball duPont, creators of the Alfred I. duPont Charitable Trust that provides dedicated support to Nemours Children’s. We hope our funding encourages other interested foundations and families, regionally and nationally, to take notice of how the Nemours Children’s Health model is uniquely advancing kids’ health.”
A Message From Clint Travis, AVP of Strategic Giving and Campaign Stewardship
Beyond Bequests
When people think of planned giving, they often consider gifts through wills and trusts; however, other strategic gifts can be made without involving a lawyer.
Here are future-focused options where Nemours Children’s can be named a beneficiary:
• Retirement Plan Assets allow donors to retain control of their assets during their lifetime. These will not be taxed if gifted to a charitable organization, whereas they will be taxed if gifted to an individual.
• Donor Advised Funds (DAF) offer donors flexibility and control over charitable giving. Most funds allow a donor to designate a charitable beneficiary for their DAF in case the donor doesn’t give it all away during their lifetime.
• Life Insurance allows donors to add Nemours Children’s as a percentage beneficiary or donate policies that are no longer needed.
Planned Giving donors share Mr. duPont’s vision of planning ahead for the needs of our children and who support Nemours Children’s through the commitment of a planned gift such as a will, trust, life insurance policy, retirement plan or gift annuity.
An investment in Nemours Children’s impacts the health of those in our care and contributes to the advancement of child health in our community and beyond, leaving a legacy that will resonate for generations to come.
To learn more about making a planned gift, please contact me: clinton.travis@nemours.org or 614.743.4903
Nemours Children’s Health honors all requests for anonymity.
Upcoming Community Events
Please join us for these wonderful events to support our patients!
Nemours Children’s Health Run & Walk
Saturday, Dec. 7, 2024
Jacksonville, Florida nemours.org/jaxrun
Night With Nemours
Saturday, Feb. 8, 2025
Orlando, Florida nemours.org/nchgala
Truist Championship
Wednesday - Sunday, May 7–11, 2025
The Philadelphia Cricket Club 6025 West Valley Green Road Flourtown, Pennsylvania truistchampionship.com
Night With Nemours Longwood Gardens
Thursday, May 15, 2025
Kennett Square, Pennsylvania nemours.org/gala
Nemours Children’s Health Run & Walk
Saturday, September 20, 2025
Wilmington, Delaware nemours.org/dvrun
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