New Brunswick, NJ – Last week, the Fernandes family traveled from South Plainfield, New Jersey, to Capitol Hill to urge Congress to continue investing in pediatric health care to ensure all children have timely access to specialized care. John Ryan, a Children’s Specialized Hospital (CSH) patient, his parents, Emeline and Joao, sister Giulianna, and aunt Emauelly, joined children and families from across the nation in Washington, D.C. for the 18th annual Speak Now for Kids Family Advocacy Day.
Speak Now for Kids Family Advocacy Week gives children’s hospitals and patient families the opportunity to advocate for federal policies, such as the need to keep Medicaid strong for kids, solve the mental, emotional, and behavioral health crisis in children, and increase funding to train physicians in pediatrics. John Ryan, his family, Matthew B. McDonald III, MD, President and CEO, Children’s Specialized Hospital, and Kelly Keefe Marcoux, PhD, APN, Vice President of Patient Care Services and CNO, Children’s Specialized Hospital, met with Senator Bob Menendez (NJ) and staff from the offices of Senator Cory Booker (NJ) and Representative Frank Pallone, Jr. (NJ-06).
When John Ryan was five months old, his pediatrician suspected something was wrong as he was not reaching two critical milestones for a baby: holding his head up and attempting to sit. An ultrasound revealed that he had macrocephaly that caused low muscle tone. After this diagnosis, John Ryan began therapy at Children’s Specialized Hospital. “After a few months of intensive therapy, John Ryan was still very delayed,” said Emeline. At 18 months, John Ryan received genetic testing, which revealed that he had GATAD2B, a rare genetic neurodevelopmental disorder.
According to the National Center for Advancing Translational Sciences, less than 1,000 people in the U.S. are diagnosed with GATAD2B. “We were very scared because of the little information we received about the diagnosis,” says Emeline. “However, we remained positive and knew however hard the road ahead was we would be in this together.”
With a formal diagnosis, therapists and specialists at CSH are helping to guide the Fernandes family through John Ryan’s care. His neurologist must follow him due to developmental delays and he has continuous therapy appointments. Since his diagnosis does not have a cure, the CSH team and his family are focusing on strengthening his core and muscle tone so he can be more mobile.
Although John Ryan is nonverbal, he can crawl and sit, and with his gait trainer, he can walk independently. “Working with CSH has made all the difference in our lives, especially for the development of John Ryan,” added Emeline. “We have the best team to guide us and help him be his best self.” Medicaid provides full support and care for all of John Ryan’s treatment needs at the hospital, his equipment, and early intervention at home.
Nationwide, approximately 42 million children rely on Medicaid for health care coverage. Yet in tough budget times, Medicaid is frequently a target for state-level and federal cuts that will make it harder for Medicaid providers like children’s hospitals to deliver care, including critical behavioral health services. On average, children’s hospitals devote half of patient care to children reliant on Medicaid.
Patient families also count on timely access to doctors trained to care for them and their unique needs. Funding for the training program for pediatric providers, the Children’s Hospital Graduate Medical Education (CHGME) program lags far behind the funding of training programs for physicians caring for adults. Children’s hospitals in the CHGME program receive just half of what hospitals caring for adults receive for similar training programs – threatening the supply of doctors caring for our nation’s children. Family Advocacy Week also serves as a platform for children’s hospitals to request that Congress increase funding for CHGME.
“Educating lawmakers on the importance of children’s hospitals and the Medicaid program is essential. It was a privilege to hear the Fernandes family tell their story and advocate for children’s health care,” said Matthew B. McDonald III, MD, President and CEO, Children’s Specialized Hospital. “Without the appropriate resources, families like the Fernandes family would be unable to help John Ryan reach his full potential. It serves as a reminder for policymakers to ensure kids have access to essential care.”
About Children’s Specialized Hospital
Children’s Specialized Hospital is the nation’s leading provider of inpatient and outpatient care for children and young adults from birth to 21 years of age facing special health care challenges – from chronic illnesses and complex physical disabilities like brain and spinal cord injuries, to a full scope of developmental, behavioral, and mental health concerns. At 15 different New Jersey locations, our pediatric specialists partner with families to make our many innovative therapies and medical treatments more personalized and effective so each child can reach their full potential.
Learn more about Speak Now for Kids Family Advocacy Day; read stories about the patient champions and cheer on the families on Facebook, Twitter and Instagram.
Contact: Megan Granozio, Marketing & PR Director
C: 732.443.7068|mgranozio@childrens-specialized.org