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Meet the Team

The members of the Children’s National Patient and Family Advisory Council have decades of experience navigating complex health conditions and pediatric care. They joined the council to share the expertise and insights they've gathered along the way — with physicians, nurses, hospital administrators and support staff and other patient families. Their dedication and hard work helps make the care and patient experience at Children’s National as excellent as possible for all patients, whether they visit once a year or dozens of times a year.

To express your interest in joining the council, please complete this form.

Executive Parent Leaders

Up until June 2012, Sharon Harley was the single mom of four beautiful children; now there are a total of six beautiful children in her family. Her membership in the Parent and Family Advisory Council (PFAC) at Children’s came via the experiences of her third child, Edmond.
At 8 months, he presented with breathing and digestive problems and several other issues. By the time he reached preschool, it was clear that he had memory difficulties, too.
What Sharon soon learned was that while Edmond had obvious problems, diagnosing him was a challenge. Therefore, because of the complexity of his condition, they began seeing several specialists at Children’s National.
Two weeks after Edmond’s ninth birthday, his face swelled up and, what was initially determined to be a dental issue turned out, instead, to be Acute Myeloid Leukemia. Edmond was hospitalized at Children’s for seven months. During this time, Sharon’s decades of experience in the dental field—as well as her experience in working with physically and emotionally-disabled children—equipped her to advocate for her son and to communicate with all sorts of people, from medical staff to fellow parents.
Sharon’s ability to connect to others, along with her skills in public relations, office coordination and social justice advocacy (in 2004, she was named Most Outstanding Advocate by the Prince George’s County Department of Family Services) have benefited her both professionally and as a volunteer. In her work with PFAC—and everywhere else—she strives to maintain an ethical, judicious and compassionate atmosphere.

Parent Advisors

Meredith Atkinson is a mom of 13-year-old twin girls, one of whom has a congenital heart defect (CHD). Her first visit to Children’s National was when she was about 24 weeks pregnant. She went to the cardiology clinic for a prenatal echocardiogram. During the procedure, one of her daughters was diagnosed with a single-ventricle CHD. The family’s long journey and relationship with the hospital was just being forged.
Shortly after birth, both of her daughters, Sofia and Mirabel, were transferred to Children’s NICU, where one would spend one month and the other two months. After discharge, they made frequent visits to various clinics and the Emergency Department for both daughters, and, of course, to the cardiology clinic.
At 6 months old, Mirabel had her first cardiac catheterization. Then, at 8½ months, she had her first open-heart surgery (OHS). At 15 months, she had her second cath; right after her second birthday, she underwent her second OHS. Days before her sixth birthday, she had a third catheterization. Then, during the summer of her seventh year, she had her third OHS.
Today, Mirabel is strong and healthy—and able to play soccer with her friends and act like a normal 8 year old. But heart disease is chronic, and she isn’t cured. The family’s relationship with Children’s will be for life.
The family has seen many changes at the hospital over the years. Mirabel was in a new and different CICU after each of her surgeries as Children’s National expanded and improved. Staff has changed a lot; people have come and gone, residents have become attendings. But one thing remains the same: Children’s is the place Meredith’s girls call their home away from home.
As a family, they are extraordinarily grateful to Children’s for giving their daughter life and years she otherwise wouldn’t have had. They learned early on that their relationship with Children’s isn’t unique. Many children spend days, weeks and sometimes even months staying in the hospital.
After going through this experience, Meredith and her family feel compelled to help others through these challenges. They’ve been fortunate to be able to give back to the CHD community through involvement with the Children’s Heart Institute’s Family Advisory Board and now the larger hospital community through Meredith’s service as a member of the Patient and Family Advisory Council.
Darcel Jackson and her husband Marc are the parents of two children. Their wonderfully-made 11-year-old daughter Anniyah has received care for her complex health needs at Children’s National since birth.
Anniyah was transferred to Children’s National’s NICU three hours after birth and three days later they learned that she was born with two rare chromosome anomalies (Mosaic Trisomy 8 and Mosaic Trisomy 18). As the additional chromosomes affect Anniyah’s full body system, she has required numerous surgeries, procedures and specialty care. They have been seen in many departments within Children’s including: primary care, complex care, neurology, ENT, cardiology, ophthalmology, orthopaedics, neurosurgery, GI, physical medicine, sleep medicine, dermatology, developmental pediatrics, urology, pulmonary, genetics, audiology, dentistry and the Emergency Department. Their visits have been both inpatient and outpatient, at the main campus as well as specialty care locations.
Darcel has worked as a parent navigator in the Goldberg Center for Pediatric Primary Care at Children’s National Hospital for 5 years and currently serves as patient and family coordinator. In this capacity, she works to advance patient-and family-centered care throughout the organization by coordinating ways in which patients and family members can contribute to the mission and values of the organization. She has served as a parent advisor to PFAC since 2013 and sits on numerous hospital committees.
Stacey Longanecker has been a parent advisor to the PFAC since its inception in 2008 and was honored to serve as chair from 2010-2012. She has also been a member of the Children’s NICU Parent Advisory Committee since 2007, including serving as a NICU parent-to-parent support volunteer.
She and her husband, Stan, are proud parents of Kendyl, 11, and Brett, 8. Their son, Brett, was hospitalized in Children’s NICU for the first three months of his life due to being born with a congenital diaphragmatic hernia (CDH). He required extracorporeal membrane oxygenation (ECMO) for 15 days and a ventilator for five weeks. He underwent surgery at 1 month old to correct the CDH.
During the last two months of his hospitalization, he overcame several feeding issues and required feeding via an NJ or NG tube. Brett underwent surgery at Children’s again at age 6 to address gastrointestinal issues. He continues to receive follow-up care for developmental issues.
The Longaneckers are grateful to everyone at Children’s National for their exceptional professionalism and compassion in caring for Brett and their whole family, and want to contribute to the continued progress of this institution in delivering family-centered care to other patients and their families.
Denise Mayo and her husband, Lonzell, live in southern Maryland and are the parents of five children. In 2008, their daughter Victoria was diagnosed with multiple midline anomalies, from congenital heart disease to a diaphragmatic hernia.
While she was hospitalized, Denise remained at her bedside every day and learned to perform most of her day-to-day care to ensure her daughter received every opportunity at the quality of life she deserved. For months, Children’s National allowed her to reside with Victoria, performing everything from g-tube feedings to her weekly trach changes. She is truly grateful for the caring staff that embraced and exemplified the culture of family-centered care.
Despite their best efforts, Victoria could not overcome the physical challenges of her illness. She entered into peace and rest in Denise’s arms in the Cardiac Intensive Care Unit. In an effort to comfort Denise and her family, people would say, “Time heals all wounds.” Eventually, Denise learned that it’s what you decide to do with the time that helps heal the wound, because the scars remain.
Through her daily experiences at Children’s, Denise saw there was a need. When she learned about PFAC, she volunteered to serve in whatever capacity was needed, joining to make a positive difference in the lives of the families at Children’s, regardless of the outcome. She wants to be part of this caring community of professionals making the journey for families a little easier.
Jana Monaco and her husband have four children, two with an inborn error of metabolism, isovaleric acidemia. Their third son Stephen suffered a traumatic brain injury at age three and a half, resulting in complex health issues due to a late diagnosis. Their daughter Caroline was tested in the newborn period and provided treatment to prevent complications. Both are followed closely in the Division of Genetics and Metabolism, while Stephen is a complex care patient followed in multiple specialties across the hospital.
As the advocacy liaison of the Organic Acidemia Association, Jana provides support to families with children affected with inborn errors of metabolism. As an advocate for newborn screening, she is a past committee member of the Secretary of Health and Human Services’ Advisory Committee for Heritable Disorders in Newborns and Children and is currently a member of the committee’s Follow-Up and Treatment Subcommittee. In addition to these roles, Jana is a member of the NYMAC Regional Collaborative Advisory Council and the Virginia Genetics Advisory Council, and is the state ambassador for the Rare Actions Network for the National Organization for Rare Disorders (NORD). Her passion for children with intellectual and developmental disabilities is supported by her education in therapeutic recreation and her former role as the family connections program manager with the D.C. Lend Program at Children’s for seven years.
As a charter member of the Children’s National Patient and Family Advisory Council and former chair for a total of four terms, Jana believes that collaboration and teamwork are vital for achieving a positive healthcare experience for all patients and families. Her experience and skills enable her to promote, support and advance patient- and family-centered care and service excellence initiatives in the hospital. She is grateful that her family’s experience and her efforts positively impact her own children’s care, as well as all patients and families at Children’s National.
TjaMeika Purnell Davenport lives in Prince George’s County, Maryland, with her husband, Edward, and their three young children. On June 6, 2006, TjaMeika learned that her second daughter, Kennedy, was born with a genetic anomaly resulting in a complex chromosomal rearrangement so rare it doesn’t even have a name.
As this affects every cell in her body, many parts of Kennedy’s body are secondarily affected. Through Children’s, she has received exceptional care in numerous hospital departments, including: neurology, ophthalmology, ENT, cardiology, GI, physical medicine, orthopaedics, developmental pediatrics, sleep medicine and complex care.
Over the years, TjaMeika’s family has experienced countless specialty care location appointments, hospital stays and Emergency Department visits. Through these varied experiences, TjaMeika’s understanding of the family’s perspective and her background in education, she can offer constructive feedback and create change for better patient- and family-centered care.
As a parent navigator, she connects caregivers to resources and helps families of children with complex health challenges help themselves. She is grateful to be afforded the opportunity to serve others through the Patient and Family Advisory Council at Children’s National.