Help Edleigh



Edleigh Viola was born on 6/27/2017 with right dominant complete AVCD, hypoplasia of the left ventricle, hypoplasia of the LVOT/aortic valve, and severe hypoplasia of the distal aortic arch and isthmus. That's quite a mouthful, but ultimately Edleigh was born with multiple heart defects limiting her heart's ability to supply proper blood flow to the rest of her body.

Her brave parents, Alyssa and Gio, knew that the first year after her birth was going to be the biggest challenge of their lives. Immediately after birth, Edleigh was brought to the CVICU for observation and to prepare for her first heart procedure. After close monitoring and meticulous analysis, by her team of doctors at the University of Minnesota, they completed her first heart surgery in July to reconstruct her aorta and to place bands on her pulmonary artery. In October 2017 she had cardiac catherization to place a balloon to stretch out scar tissue in her aorta.

In January 2018 Edleigh had heart surgery to reconstruct her AV septum, and removed the bands on the pulmonary artery. The doctors did a great job of repairing the known defects. But, during the procedure they uncovered an additional unknown and extremely rare heart defect. Since the doctors were not prepared for this, they were not able to fix it at this time. This rare defect is called double orifice mitral valve.

To fix this rare defect, Edleigh and Alyssa will need to be transported by a medical aircraft to Boston, to see the one doctor in the world that can repair this for her. This is an urgent matter, because it is causing her to have high blood pressure. The high blood pressure requires her to have a PICC line to have 24/7 infusions of high blood pressure medication. Being constantly connected to the IV is slowing down her gross motor development. She has also developed a blood clot in her PICC line, which needs to be treated with blood thinners. This blood clot can quickly become fatal. Resolving this heart defect will allow her heart to function more normally and will minimize these other complications. The surgery is planned for 5/21/2018. The medical costs have been catastrophic, and the intensity of her medical conditions have led to parents lost wages. They no longer have two full incomes, due to numerous hospitalizations, medical appointments, and all her many needs associated with her medical conditions.

Gio will need to remain in Minnesota to keep working, so Alyssa will accompany Edleigh to Boston and will have to remain there with her for an undetermined amount of time for her surgery and for the recovery. There is a waiting list for the Ronald McDonald House, so the cost of lodging, food, transportation, incidentals, and the overall cost of the procedure will be great. This family has been through a lot and taking some of the monumental financial burden off them will help ease their stress slightly. Allowing them to focus on their trip and healing this brave little warrior. Thank you for taking to the time to read this and thank you for any help you can offer.