Hannah Winkler, 23, was diagnosed with a devastating, life-threatening congenital heart defect at the age of thirteen. She has the opportunity to be the recipient of a pioneering open-heart surgery that could potentially save her life. Our goal is to relieve some of the financial burden off of her and her family as they travel from their home in Michigan to New York for the surgery and the lengthy recovery.
Hannah is a spectacular young woman who has spent her life living with and raising awareness for invisible disabilities, congenital heart defects, and Pulmonary Hypertension. She is a graduate of Port Huron High School (Class of 2014) and has a degree in Early Childhood Education from SC4 (Class of 2016). She was crowned Miss Teen Detroit in 2015, where her platform was invisible disabilities. Hannah is a bubbly, kind, optimistic, and loving young woman, who has been forced to give up her passions, such as dancing, theatre, golf, and her dream of becoming a preschool teacher because of her deteriorating condition.
Hannah was born with an extremely rare, congenital heart defect called aortopulmonary window – a hole in her heart between her aorta and pulmonary artery. Because this defect was not found until she was 13 years old, and she had developed secondary pulmonary hypertension (high blood pressure in her lungs) there was no surgical option to treat her condition. The combination of these issues is a condition called Eisenmenger’s Syndrome. So rare, that a specialist at U of M once said that seeing her exact combination of health issues was like seeing a three-legged unicorn walking into the waiting room.
If left untreated, people with this condition rarely survive infancy. Hannah’s very rare condition means she has limited treatment options that often are experimental and have included many medications that make her feel sick and have affected her quality of life. Her condition has resulted in her enduring multiple right-heart catheterizations, coils inserted into the vessels in her lungs, a stroke, and daily medications with debilitating side-effects. Until recently, we believed that Hannah’s near future would involve a lung transplant, but her doctors at New York’s Columbia Presbyterian Hospital have developed a cutting-edge, open-heart surgery that may prevent or delay her need for a lung transplant in the future. The surgery will seek to close the existing hole in her heart and open a new hole in an area of less resistance. The goal is to reduce her pulmonary pressure, thus decreasing the imminent risk of brain damage and coronary artery disease and increasing the oxygen saturation in her blood which will restore her quality of life.
As our sweet Hannah approaches the ten-year anniversary of her diagnosis (June 1), she is facing the biggest challenge yet in her young life. She will be the fourth person, ever, to have this particular surgery and the first adult. We hope that this surgery will improve and extend Hannah’s life and that it will help lay the path forward for other people living with her condition. She has a limited window of opportunity to receive this surgery, as it must be done while her health is still relatively stable, but that window is closing. The surgery will be very challenging for Hannah and her family. Not only is it open-heart, but she will need to spend a minimum of 5 days on life support (ECMO), will remain in the hospital for several weeks to months as she recovers, and receive on-going pulmonary rehabilitation. As part of the preparations for her surgery, she is undergoing the steps required to be placed on the lung transplant list, in the event that the surgery is not successful.
Please consider helping us take the financial burden off Hannah and her parents – Cathy and Mike Winkler. The family will be traveling from their home in Michigan to New York City for this surgery and treatment. It will require them to stay in New York City for approximately two months as she undergoes and recovers from the open-heart surgery. The costs associated with this procedure will be tremendous for the Winkler family. They should not need to worry about finances during this time but focus all of their attention on helping to heal Hannah’s heart, once and for all. Please consider donating to help Hannah and her family through this exciting, but very strenuous procedure. Please pray for Hannah and share her story.