Family Advocacy Day brings approximately 30 families from the nation’s top children’s hospitals to Washington each summer. While there, families educate members of Congress and the media about the quality health care that all children and families need and to address critical medical and health care concerns for children specifically in their home state.
Our daughter Claire was born six weeks premature with a cleft lip and palate. Three days later, she was diagnosed with autosomal recessive polycystic kidney disease and congenital hepatic fibrosis (ARPKD/CHF). The prognosis was grim and doctors didn’t expect her to survive. When Claire was 2 days old we had her baptized in the Neonatal Intensive Care Unit and prepared for the worse. But thanks to endless prayers and the excellent care we received at Children’s Hospitals in Indianapolis, Pittsburgh, Chicago and Milwaukee, Claire has grown up with a rare disease and is living a very full life at age 11 doing remarkably well 18 months after her kidney transplant. It’s been a long and difficult journey, and while no parent ever chooses to have a child with a chronic and progressive disease, it’s a journey we make with tremendous pride, faith, hope, and the expectation of excellent health care for her and for all children in America.
Today Claire faces an uncertain future with the progression of her chronic liver disease (CHF) and will have orthopedic surgery in August to correct the abnormal growth of both knees caused by renal osteodystrophy. She has ongoing tests and procedures at Children’s Hospital of Wisconsin to monitor her transplanted kidney and diseased liver. She also sees the cleft lip and palate team and will require additional corrective surgeries in the years ahead.
As a mom, I can’t tell you how painful it is to place my precious child into the arms of a nurse and watch her disappear down a long hallway to the operating room not knowing what the outcome will be. Or the hundreds of times I’ve held Claire’s hand throughout long nights in the hospital or during painful procedures and tests all while giving her encouragement and strength as I’d quietly turn my head to wipe my own tears. It has become an all too familiar routine and remains an aching fear in my heart because our medical concerns with Claire are lifelong.
But gratitude and hope are always with us at Children’s Hospital of Wisconsin and as difficult as it is to go through so much with Claire we fully realize both the value and the importance of having a children’s hospital with dedicated doctors, nurses and staff who become like family and include us as part of the medical “team” working together to provide the very best care so that Claire can continue to dream and hope for her future. And this is why we’re thrilled to represent them at this year’s Family Advocay Day.
We also realize how critical it is for our representatives in Congress to fight for children by ensuring things like:
- Pharmaceuticals: Accessibility of pharmaceuticals that are tested and labeled appropriately for children and a consistent and safe pharmaceutical supply chain to children’s hospitals.
- Medical Research: Children’s hospitals and pediatric departments of university medical centers account for 35 percent of all pediatric research funded by the National Institutes of Health. However, since children represent only about a quarter of the population and less than 11 percent of personal health care spending, there is limited commercial advantage for private sector investment in research focused on children’s needs. Therefore, children’s hospitals depend on vital sources of public funding, such as NIH grants, to keep the research pipeline flowing.
- Medicaid: Medicaid is an indispensable health program providing health insurance coverage for 490,030 low income children in Wisconsin. Thirty-five percent of Wisconsin children are enrolled in Medicaid. Wisconsin will lose $1.51 in federal matching funds for every $1 in state money it cuts from its Medicaid budget. Just think of how that will impact the medical care of an estimated 67,000 Wisconsin children who are uninsured. Medicaid faces serious financial threats that endanger the health of Wisconsin’s children.
These are just a few of the concerns we’ll be addressing on our trip to Washington D.C. in July.
The highlight of Family Advocacy Day (after a full day for of advocating on Capitol Hill) will be a patriotic-themed family festival at the JW Marriott, right by the White House. At this event, families will share their stories of survival along with their dreams for the future in a fun atmosphere with entertainment for the children. Michelle Obama has been invited to attend the festivities and we would be so honored if she’s able to celebrate with us!
Learn more about this event sponsored by Children’s Hospital Association, the voice for all children’s hospitals in America.
We’re so very proud to represent Children’s Hospital of Wisconsin at this event in Washington DC and even more honored to bring important issues and concerns affecting the health and medical care of ALL children in Wisconsin!
~ Linda Bevec, guest blogger
Learn more about Claire’s journey by visiting her CaringBridge website.