Essay --

Hutchinson-Gilford Progeria Syndrome â€Å"Progeria† or â€Å"HGPS† is a rare and fatal genetic condition characterized by an appearance of accelerated aging in children. This disease affects approximately 1 in 4-8 million newborns with an estimated 200-250 children living with Progeria worldwide. It affects both sexes equally and all races. Children who are born with Progeria may not exhibit symptoms until the first year of life often characterized by; growth failure, loss of body fat and hair, aged-looking skin and stiffness of joints. As children get older some of the many conditions they suffer from are osteoporosis, generalized atherosclerosis, cardiovascular disease and stroke. Many to all children affected by Progeria die of atherosclerosis at an average age of thirteen (Proc Natl Acad Sci U S A, 2012) ( The Progeria Handbook; A Guide for Families and Health Care Providers of Children with Progeria, Chapter 3, 2010.) A student with Progeria would qualify as an OHI under IDEA because they would have limited strength due to their small stature and bone afflictions. Vitality and/or alertness would also be affected because many students don’t have enough stamina for a full school day without rests. Students are also at a greater risk for heart complications and other health emergencies that may need proper monitoring throughout the school day by a caretaker. All of these and many more issues are due to their chronic health problems which adversely affect the pupil’s educational performance (Parent Information Network, 2008) (Proc Natl Acad Sci U S A, 2012) ( The Progeria Handbook; A Guide for Families and Health Care Providers of Children with Progeria, Chapter 3, 2010) ( The Progeria Handbook; A Guide for Families and Health Care Pr... ...gns of stroke, heart failure, or what to do in the case of a seizure. This information will be invaluable in the case of an emergency. In addition, students with Progeria may be on many medications, the school nurse as well as other staff need be aware of this and their possible side effects. All of this and much of the information above need to be included in the child’s IHCP. Although this disease is rare it’s not impossible to be faced with a child whom is afflicted; with proper parent and staff communications the child can have a positive and accomplished schooling experience ("Ihcp - individualized," ) ("Individual health care," ) ( The Progeria Handbook; A Guide for Families and Health Care Providers of Children with Progeria, Chapter 3, 2010) ( The Progeria Handbook; A Guide for Families and Health Care Providers of Children with Progeria, Chapter 16, 2010.)