Morgan Stanley Children's Hospital of NewYork-Presbyterian Backs National Family Advocacy Day
Jun 13, 2006
Morgan Stanley Children's Hospital of NewYork-Presbyterian has made such a dramatic impact on the life of 14-year-old Katherine Urena that her family is traveling to Washington, DC today to share their story with representatives from the offices of Senators Hillary Rodham Clinton and Charles Schumer as well as other members of Congress. For the second year in a row, the National Association of Children's Hospitals and Related Institutions (N.A.C.H.R.I.) Family Advocacy Day is bringing in dozens of families from across the country to speak about the children's hospitals that have saved their lives and have served them so well. Thirty families from 17 different states will be at this year's conference on June 13 and 14.
Katherine is a very bright, articulate and gregarious teenager who has congenital muscular dystrophy and has been a patient at Morgan Stanley Children's Hospital of NewYork-Presbyterian since she was three weeks old. Katherine has been forced to use a wheelchair since she has severe muscle weakness and is unable to walk. She has had a hip displacement and needs to be very careful since her bones do not stay in place due to her muscle weakness. Katherine also has scoliosis and asthma. Even though she has all of these complications, she is a well adjusted child. She will finish the 8th grade this year and loves school. Traveling to Washington won't be an easy journey for Katherine but the chance to advocate for her children's hospital gives her strong motivation. She is looking forward to the opportunity to express the importance of Medicaid and how having Medicaid has impacted her life.
When Katherine was diagnosed with congenital muscular dystrophy, we were overwhelmed and not sure how to care for her," said Katherine's mom, Altagracia Urena. "Not only did Morgan Stanley Children's Hospital provide Katherine with the best treatment available, they also helped our family have hope for her survival and learn how to provide the proper care."
There's no better way for Senators Clinton and Schumer and Congress to understand the value of children's hospitals than to hear from patients themselves," said Dr. M. Christine Krause, attending physician at Morgan Stanley Children's Hospital of NewYork-Presbyterian and assistant professor of Clinical Pediatrics at Columbia University College of Physicians and Surgeons. "We're proud to have Katherine and her family represent Morgan Stanley Children's Hospital in Washington. It is our hope that Katherine's story will leave them with a new or renewed appreciation for Morgan Stanley Children's Hospital and children's hospitals across the country and make us a priority on their agenda."
Part of our goal for this year's Family Advocacy Day is to educate Congress on the negative affect that cutting federal Medicaid funding and weakening Medicaid's guarantee of medically necessary care for children could have on the ability of children's hospitals to care for all children," said Lawrence A. McAndrews, president and CEO of N.A.C.H.R.I. "Clearly, patients and their families compellingly illustrate the role children's hospitals play in communities nationwide."
There are more than 200 children's hospitals nationwide providing specialized care to children in all parts of the United States. Medicaid is the single largest payer of care for children's hospitals, averaging 50 percent of hospital revenue.
About Congenital Muscular Dystrophy
Children born with congenital muscular dystrophy sometimes have more obvious symptoms such as joint deformities, dislocated hips, and severe contractures (inability to relax muscles). These are due to the baby not having the muscle strength to move freely in the womb. Children with congenital MD generally have normal intellect. There is no cure for muscular dystrophy and for the time being, treatment is aimed at preventing complications due to the effects of weakness, decreased mobility, contractures, scoliosis, heart defects, and respiratory weakness.
Morgan Stanley Children's Hospital of NewYork-Presbyterian
Ranked by U.S.News & World Report as one of the top five children's hospitals in the country, Morgan Stanley Children's Hospital of NewYork-Presbyterian offers the best available care in every area of pediatrics including the most complex neonatal and critical care, and all areas of pediatric subspecialties in a family-friendly and technologically advanced setting. Building a reputation for more than a century as one of the nation's premier children's hospitals, Morgan Stanley Children's Hospital of NewYork-Presbyterian is affiliated with Columbia University College of Physicians and Surgeons, and is New York City's only hospital dedicated solely to the care of children and the largest provider of children's health services in the tri-state area with a long-standing commitment to its community. Morgan Stanley Children's Hospital of NewYork-Presbyterian is also a major international referral center, meeting the special needs of children from infancy through adolescence worldwide.