Children's staff and families take to DC for Family Advocacy Day

CHBinDThe health needs of children and adolescents are unique from those of adults. But despite their significant differences, when it comes to applicable laws and regulations, pediatric health care policies are often lumped in with adult heath care legislation, which can have detrimental repercussions. But starting tomorrow, legislators won’t be able to ignore these pressing pediatric issues, as kids with pediatric health conditions and their families descend on Washington, DC, to discuss how pediatric public policy impacts their everyday lives. Family Advocacy Day, which kicks off tomorrow, is an annual, national event sponsored by the National Association of Children’s Hospitals (NACH), where patients get the chance to communicate directly with leaders on Capitol Hill about important pediatric care issues.

Children’s Hospital Boston staff are accompanying two families to meet with legislators, and Children’s Family Advocacy Day representatives will be keeping a communal blog to share their thoughts and experiences during the trip. Check out childrensindc.wordpress.com and read about Zebediah and John, two boys who will meet with lawmakers and share their stories about pediatric illness, treatment and what it’s like to be a kid with serious medical issues.

Meet the 2010 Children’s Hospital Boston family advocacy team

zebediah-knappZebediah

When he was very little, Zebediah was diagnosed with severe sleep apnea and alveolar hypoventilation syndrome. He’s undergone many surgeries since then, but his adenoids have often grown back and lead to breathing problems, sensory issues and sleep deprivation. It’s a lot for a child to go through, but thanks to his fighting spirit and the hard work of his Children’s medical team, Zebediah’s family says they think his health challenges could soon be resolved.

john-gillespieJohn

During his fourth grade year of school John became very sick. Doctors at Children’s diagnosed him with severe ulcerative colitis, an autoimmune disease that attacked his young body so strongly that his colon needed to be removed. Thankfully, after surgery and months of recovery time, John is back at school and playing baseball again.

Children’s staff:

In addition to Zebediah, John and their families, Children’s will be sending James Mandell, MD, Children’s CEO and a pediatric urologist, Dennis Rosen, MD, associate director of Children’s Sleep Lab, and nurse manager, MaryEllen Green, who works on a floor at Children’s dedicated to Complex Care Services.

It’s the hospital’s hope that first person stories from those touched most deeply by childhood illness, when combined with expert testimony by pediatric health care providers, will impart on those in power the impact public policy can have on the level of care for children and their families. Please visit childrensindc.wordpress.com often over the next two days to check out an insider’s perspective on this exciting event.