Reynoldsburg Family to Meet Members of Congress and Share Story of Bone Marrow Transplant to Cure Sickle Cell

The afternoon of June 18, 12-year-old Kimmi Desir of Reynoldsburg begins the field trip of a lifetime. Kimmi, a patient at Columbus Children’s Hospital where she received a bone marrow transplant for sickle cell disease, will participate in the June 19-20 National Association of Children’s Hospitals (N.A.C.H.) Family Advocacy Day in Washington, DC. Kimmi, along with other children and families from across the country, will speak with Congressional lawmakers in support of the children’s hospitals that saved/made an impact on their lives.

“I am excited to meet Representatives Tiberi, Pryce and Hobson to tell them how much Columbus Children’s has helped me and my family. I’m able to live a better quality of life and make this trip because of its help. Children’s Hospital and my doctors give me and thousands of other patients like me, hope,” Kimmi said.

On June 15, Kimmi will begin a blog about her adventures before and during her trip to Washington. She will share how her sister, Melissa, volunteered to be Kimmi’s donor for her bone marrow transplant, and the unique role Columbus Children’s Hospital had in providing care to her. Kimmi will also share how she feels about being selected to represent all children who need access to regular doctor visits, specialized and emergency care and what it’s like to meet with federal lawmakers.

Columbus Children’s Hospital serves more than 700,000 patient visits annually. “There’s no better way for the members of Congress with whom Kimmi will meet to understand the value of children’s hospital’s specialized services than to hear from patients themselves,” said Children’s Hospital Director of Federal Government Relations Morna Smith, who will be accompanying the Desir family to Washington.  “We’re proud to have Kimmi and her family represent Columbus Children’s in Washington. It is our hope that her story will leave them with a renewed appreciation for children’s hospitals across the country.”

The opportunity to reauthorize the State Children’s Health Insurance Program (SCHIP) and advocate the passage of the Children’s Health Quality Act makes this year’s Family Advocacy Day especially important. To continue providing medical services for children in communities nationwide, children’s hospitals and N.A.C.H. advocate maintaining a strong Medicaid safety net for children, the reauthorization of the State Children’s Health Insurance Program, funding for the development of quality measures to improve health care for children—the Children’s Health Care Quality Act, and funding for the federal Children’s Hospitals Graduate Medical Education Program to support the hospitals’ physician training.

“The courage of these children is truly remarkable,” said Lawrence McAndrews, president and CEO of N.A.C.H. “Many of them have special needs and will make a long journey to Washington to deliver their message to Congress that both sick and well children need access to doctors and hospitals that specialize in pediatric care. Congress must do everything in its power to ensure that funding continues to flow to programs that ensure children’s health care coverage and treatment.”

Nationwide, children’s hospitals represent less than 5 percent of all hospitals but they provide nearly 40 percent of all hospital care for all children and most of the hospital care for children with serious medical conditions, train the majority of pediatricians and virtually all pediatric subspecialists and research scientists, and are the safety net for the poorest children in their communities, serving children regardless of family ability to pay. 

Visit Kimmi Desir’s blog at http://childrenshospitals.typepad.com/fad2007 from June 15 through 29.

For more information on Family Advocacy Day please visit www.childrenshospitals.org.

Columbus-Area Child Patient to Chronicle Her Visit to Capitol Hill Through Daily Blog
Local Family to Visit Washington to Share Importance of Children’s Hospitals with Congress as Part of N.A.C.H Family Advocacy Day

Who:
Kimmi Desir had lived with sickle cell anemia for the first 11 years of her life. Kimmi will share her personal story of how her sister Melissa volunteered to be Kimmi’s donor in a bone marrow transplant to cure her of sickle cell, and the unique role Columbus Children’s Hospital had in providing care to her.

What: 
BLOG LAUNCH 
Kimmi is one of more than 30 child patients and their families participating in the National Association of Children’s Hospitals (N.A.C.H.) third annual Family Advocacy Day that brings together child patients and Members of Congress. These families will spend two days in Washington, touring the nation’s capital and meeting with Congressional leaders to tell their story and advocate for continued support of the Children’s Hospital system and Medicaid funding. 

Kimmi will chronicle her experience on a blog hosted by N.A.C.H. The blog, which can be found at http://childrenshospitals.typepad.com/fad2007, will launch June 15 and will continue until June 29.

When: 
June 15, 2007 

****Kimmi’s blog can be found at http://childrenshospitals.typepad.com/fad2007