Families Head to Hill to Champion Pediatric Care

June 22, 2011

“Darth Vader” Among Kids Speaking Out for Children’s Access to Services

ALEXANDRIA, Va., June 22, 2011 /PRNewswire-USNewswire/ — Although they are the youngest patients in the health care system, they know firsthand how open heart surgery, organ transplants or physical therapy can transform a life.

More than 25 children and their families will travel from around the nation to share their stories with Capitol Hill lawmakers during the National Association of Children’s Hospitals (N.A.C.H.) Family Advocacy Day event July 25-26. In the face of threats to pediatric care, the families will champion the rights of every child to have the right care at the right time, should they need it.

Proposals to slash funding for Medicaid, the nation’s largest provider of health coverage of children, and calls to eliminate funding for the only federal program dedicated to training pediatricians have put access to care in jeopardy.

“These families juggle so many responsibilities between day-to-day obligations and caring for sick children,” said Lawrence McAndrews, president and C.E.O. of N.A.C.H. “Their willingness to travel to Washington to meet with lawmakers and champion pediatric care underscores the importance of these issues.”

The threats are alarming to families like the Pages. Son Max, a 6-year-old most widely known for portraying Darth Vader in Volkswagen’s 2011 Super Bowl commercial, was born with a heart defect called tetralogy of Fallot. The pacemaker he received at Children’s Hospital Los Angeles allows him to pursue his favorite hobbies — acting, swimming, golfing, playing baseball and hanging out with his brother Ellison.

Dozens of other children will join Max Page on Capitol Hill, including:

  • Bailey Allen, 11, of Carlisle, OH – Doctors saved her foot from being amputated by successfully shrinking and removing a congenital fibrosarcoma tumor.
  • Jonathan Baldwin, 18, of Milwaukee, WI – Jonathan, who just finished his freshman year of college, recovered from being shot seven times by a robber.
  • Justin Boykin, 3, of Tampa, FL – A cerebral palsy patient, Justin receives Botox injections in his legs to address his muscle spasticity. The injections have improved his response to occupational, physical and aqua therapy.
  • Evan Cameron, 19, of Dover, OH – Received an automated implantable cardiovertor-defibrillator (AICD) in his chest after he suffered cardiac arrest due to a ventricular rhythm anomaly.
  • Connor Carlisle, 9, of St. Petersburg, FL – Born with cloverleaf skull and an Arnold-Chiari type 1 malformation and later diagnosed with Crouzen syndrome and cerebral palsy, Connor has endured 30 surgeries. Thanks in part to a physical and speech therapy regimen, Connor just completed second grade.
  • Elizabeth Carter, 18, of Crestwood, KY – Like Max, Elizabeth has a rare and complex heart defect called tetralogy of Fallot and has undergone open heart surgery to correct it.
  • Shane Casey, 5, of Memphis, TN – Shane has a rare form of epilepsy and is benefiting from a drug therapy to calm his spasms.
  • Tessa Fitzgerald, 15, of South Lyon, MI – Pulmonary specialists at Children’s Hospital of Michigan help Tessa, who has cystic fibrosis, maintain her lung capacity.
  • Ally Gillen, 10, of Mahtomedi, MN – Diagnosed with a rare and life-threatening auto-immune disease called dermatomyositis that left her unable to get out of bed, she now enjoys swimming and spending time with her therapy dog, Angel.
  • Kylie Herod, 1, of Goffstown, NH – Doctors at Children’s Hospital Boston figured out her puzzling set of symptoms was CHARGE syndrome, a genetic condition that causes difficulties with feeding, walking and communication.
  • Thomas Krilosky, 5, of Parma, OH – Received two cochlear implants after being diagnosed with profound hearing loss as a newborn.
  • Noelle Krockey, 8, of Homer Glen, IL – Diagnosed with biliary atresia, a rare condition in which the common bile duct between the liver and small intestine is blocked or absent, Noelle received two liver transplants.
  • Maryn Leland, 4, of Arlington, VA – Despite a diagnosis of pyruvate dehydrogenase deficiency, deafness, blindness, epilepsy and other challenges, Maryn has learned to sit up, roll over, communicate with pictures and verbalizations and walk with assistance.
  • Minerva Love, 5, of Fort Washington, MD – Minerva receives ongoing rehabilitation for quadriplegic cerebral palsy.
  • Ariana McGuire, 7, of Bridgewater, NJ – Ariana learned to walk and talk again after being struck with an arrow and sustaining a brain injury.
  • Gabriella Murata, 17, of Las Vegas, NV – When her kidneys failed due to Churg-Strauss syndrome, Gabriella received life-saving plasmapheresis procedures and dialysis.
  • Nadiya Pelovitz, 6, of Severn, MD – The staff at Mt. Washington Pediatric Hospital helped Nadiya with a ketogenic diet, which transformed her intractable epilepsy into a manageable condition.
  • Franchesca Polo, 14, of Brooklyn, NY – Franchesca was diagnosed with Niemann-Pick disease type B, a progressive disease that impacts her liver, spleen and lungs.
  • Morgen Rhynes, 11, and Meadow Rhynes, 8, of Providence Village, TX – The sisters underwent surgery to repair severe internal injuries following a car wreck.
  • Chase Ringler, 7, of Charleston, SC – Doctors successfully removed a tumor from Chase’s left adrenal gland after he was diagnosed with stage IV neuroblastoma, a cancer with a 30 percent chance of survival.
  • Crystal Rodriguez, 7, of Homestead, FL – Crystal received a transcatheter pulmonary valve implantation to repair her congenital heart defect, tetralogy of Fallot.
  • Kyla Roerty, 9, of Mechanicsville, VA – After being diagnosed with cerebral palsy, Kyla received a spinal surgery called selective dorsal rhizotomy and intensive physical therapy to improve her condition.
  • Christopher Shaheen, 9, of Orange Park, FL – Born with osteogenesis imperfecta (“brittle bone disease”), Christopher underwent a series of surgeries and continues to receive pamidronate infusions to minimize fractures.
  • Reese Sunderland, 4, of Hemlock, MI – Born 3 months premature along with her twin Ryleigh, Reese developed scar tissue in her trachea from a long-term intubation. To date, she has undergone two surgeries for airway reconstruction.
  • Lily Rose Watson, 1, of Lebanon, ME – Born with a severe skull deformity called craniosynostosis and a rare genetic condition called Saethre-Chotzen, Lily underwent skull reconstruction surgery when she was 15 months old.
  • Brandon Woods, 8, of Pickerington, OH – After being diagnosed with dilated cardiomyopathy, Brandon underwent heart transplant surgery in 2009.

About the National Association of Children’s Hospitals

The National Association of Children’s Hospitals (N.A.C.H.) is the public policy affiliate of NACHRI. N.A.C.H. is a trade organization of 140 children’s hospitals and supports children’s hospitals in addressing public policy issues that affect their ability to fulfill their missions to serve children and their families. N.A.C.H. fulfills its mission and vision through federal advocacy, collaboration and communication designed to strengthen the ability of children’s hospitals and health systems to influence public policy makers, understand federal and state policy issues, advance access and quality of health care for all children, and sustain financially their missions of clinical care, education, research and advocacy.

For more information on Family Advocacy Day, visit www.childrenshospitals.net.

Berna Diehl
Jones Public Affairs

Gillian Ray, Norida Torriente
National Association of Children’s Hospitals
gray@nachri.org, ntorriente@nachri.org

SOURCE National Association of Children’s Hospitals

Source: newswire

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