Madeline "Maddie" Grace Schramm, was born with a congenital abdominal wall defect called an Omphalocele as well as a Diaphragmatic Hernia. The combination of the two abnormalities caused her lungs to be extremely damaged and underdeveloped. As a result, she developed a life threatening condition called Pediatric Pulmonary Hypertension. After birth, Maddie spent several months in the NICU. She underwent three major surgeries and countless procedures, but at 6.5 months old she defied the odds and came home. Although she lived 24 hours a day attached to a ventilator and a medicine pump, she learned to crawl, talk, walk, laugh, and dance. When Maddie turned 2, they told us that because of the Pulmonary Hypertension her heart was working so hard it was running the equivalent of 5 marathons a day. It had become extremely enlarged and was not working properly. On September 25th 2015, at 2 ½ years old Maddie went to dance with the angels free from the machines and equipment that kept her alive on earth.
Until recently there were no treatments for Pediatric Pulmonary Hypertension. In the last 20 years, a lot of progress has been made towards understanding the disease and it is because of those scientific and medical developments that we were blessed with Maddie for the time that we had her. Doctors and researchers are working hard to study causes, discover better treatment options, and hopefully one day, find a cure. Maddie’s Big Heart Foundation’s mission is to raise money to help fund this research as well as programs that support children and families that live with it.
We hope to see you soon.
The Schramm Family
(Malia, Jeff, Ella and Haven)