Graysen's Lifeline

About the Keatons of Milton, West Virginia

On Wednesday, July 6th, the Keaton family from Milton, West Virginia joined The Arc and other families that would be affected by Medicaid cuts in a meeting with key staff at the White House. The purpose of the meeting was for the White House to hear how Medicaid cuts would affect each family's circumstances as President Obama continues to engage in deficit reduction talks.

Amanda and Greg Keaton are parents of 18-month-old Graysen, who has DiGeorge Syndrome. DiGeorge syndrome (22q11.2 deletion syndrome) is a disorder caused by a defect in chromosome 22, resulting in the poor development of several body systems. Graysen's main medical conditions include two severe congenital heart defects - Tetralogy of Fallot and Pulmonary Atresia. In addition, Graysen has required a tracheostomy and ventilator support since 8 weeks old. Graysen spent his first six and a half months in the hospital, and his one year anniversary at home was June 21, 2011. In his young life, Graysen has suffered two strokes, undergone three open heart surgeries, a feeding tube placement, multiple heart catheterizations, and he hit the $1 million cap on his mother's health insurance before he turned four months old. Graysen's nursing care, specialized pediatric tube feedings, along with other important therapies and preventive medications and vaccines are covered by Medicaid through West Virginia's Children with Disabilities Community Services Program.

"Drastic cuts in Medicaid would force me to quit my job to take care of Graysen, as I couldn't afford the nursing care without it. Medicaid is our lifeline, and I'm going to urge the White House to keep the nation's commitment to provide for the most vulnerable, like my son, so that he can continue to live with us and we can keep our jobs and our home," said Amanda Keaton.