Every year in the United States, approximately one in 25,000 babies are born with a condition known as congenital hyperinsulinism. It is a genetic disorder in which babies are unable to regulate their blood glucose level due to persistent insulin secretion by the pancreas. This causes severe hypoglycemia. Congenital hyperinsulinism, if left undetected, can cause severe brain damage, seizures, and even death. There is currently no cure for this disorder.
It is a life-long battle to manage low blood sugar with frequent feedings, medication, and sometimes surgery to remove all or part of the pancreas. Many babies leave the hospital without ever having their blood glucose level checked. These babies that go undetected end up have seizures and brain damage that often lead to developmental delays and even death. A simple blood glucose check during the newborn screen would help diagnose this disease at an earlier stage to prevent future seizures and brain damage.
Our continuing mission is to raise awareness for this disease and to provide support to afflicted families throughout the world. To that end, our 2011 calendar includes a rally at the state capital of Texas in Austin for mandatory blood glucose testing and our 2nd annual Hyperinsulinism Awareness Conference.
August 4-7 2011, we plan to hold our 2nd annual Hyperinsulinism Awareness Conference in Fort Worth, Texas. The conference is to provide families a chance to learn about the latest medical technologies and techniques for battling this disease. We are collecting donations to help fund our conference and would appreciate any support you are able to offer.
Many families are unable to afford medication and medical devices or attend educational conferences. The HI FIVE Kids Family Fund was created to help offset the cost of medications and medical devices not covered by insurance, to help remove financial barriers preventing parents and caregivers from attending educational conferences, and to assist families in connecting with other afflicted families.
We would like to be able to travel to meet the families and be there for support while they are attending Cook Children Medical Center for care. Many of the parents are there from 2-4 months. The Organization is in need of a Vehicle for transportation to the events.
Our Second fund is the High Five Kids College Fund.
I think it is important to provide an education to HI families.
Many of the parents are spending every three hours feeding their child to keep their sugars up and do not have the time to finish their education. I think providing this to the parents and children is very important. I would also like this fund to educate medical doctors who want o go to college and learn more about these dieses. But their residence must be at an USA HI center.
Thank you for your donations and Support for the Organization and joining us in raising awareness for families affected of Hyperinsulinism
Copyright 2011 Children Against Hyperinsulinism. All rights reserved.