Evan’s Radiant Warrior Spirit Fund

Please support 9 month old Evan who is recovering from a 3rd heart surgery; battling Pulmonary Vein Stenosis a rare serious heart condition. Please join family and friends in supporting Evan with prayers and donations as he recovers from his third heart surgery. Money raised in Evan's Radiant Warrior Spirit Fund will be used to help cover medical costs not covered by insurance, medical related travel expenses as well as to offset household expenses as they are now a one income family as his mom has taken a leave of absence from work to care for Evan.Evan is a 9 month old with a radiant warrior spirit whose infectious soul has inspired us all to be better people. At 24 weeks gestation, doctors found that Evan would be born with a congenital heart defect known as Atrioventricular Septal Defect (AVSD) as well as Trisomy 21 (Down syndrome). AVSD is a general term for a group of rare heart defects that are present at birth. In Evan's case he was born with a large hole in the middle of his heart and had one common valve where there should be two. His condition would require surgery by the time he turned 6 months of age. The surgery to repair the defects are highly successful and typically do not require any future surgeries. Trisomy 21 occurs when a person has 47 chromosomes instead of 46; it is not a disease and will not define who Evan is or who he will become.Evan was born at 36 weeks and after spending 26 days in the neonatal intensive care unit at West Penn Hospital, he came home and thrived. He was seen regularly by his cardiologist and the goal was to get him to gain weight until surgery. On May 1st, Evan underwent his first open heart surgery to repair the AVSD. After surgery Evan developed complications and a tear in the original repair. On May 19th Evan underwent his second open heart surgery to close the residual hole. The second surgery went great and after only 7 days in the hospital he was sent home with no expectations for another surgery. Both surgeries were performed at Children's Hospital of Pittsburgh.On July 8th, Evan was re-admitted into Children’s Hospital of Pittsburgh and it was discovered that Evan had developed Pulmonary Vein Stenosis (PVS) a rare but serious heart condition with no known cause. We are fighting for a cure! PVS is causing the narrowing of the pulmonary veins from his lungs to his heart causing heart failure. The best option available was to surgically repair the vein but the chance for re-narrowing is very high.There is a clinical trial in Boston, MA that is showing some promising signs and involves a chemotherapy drug in order to prevent the veins from re-narrowing after surgery. Boston Children’s Hospital is the only hospital in the U.S. with a dedicated Pulmonary Vein Stenosis program with expert surgeons and clinicians dedicated to treating children with PVS. As recommended by his doctors at Children's Hopsital of Pittsburgh, in order to ensure Evan received the best care for this condition and is able to participate in the trial he needed to have the surgery done in Boston. After working through the insurance review and approval process, Evan and his mom Kiana were transported to Boston's Children's Hopsital on July 23rd. Evan has his third open heart surgery on Aug 1st. Thanks to supporters and donations, dad Ryan (Coop) and 5 year old Big Brother Cameron joined Evan and Kiana in Boston for many days. Kiana and Evan remained in Boston while Evan recovered. Donations supported Kiana's Boston accommodations. Evan was discharged from Boston Children's Hospital on Tuesday, August 26th. Kiana and Evan flew home to Pittsburgh, PA on a domestic airline. Flight costs were paid for by supporters of Evan's fund! Evan is now under the care of his doctors in Pittsburgh. The doctors in Boston will continue to monitor Evan's recovery including the status of the PVS activity. It is expected that Evan may need additional procedures which will be performed at Boston's Children's Hospital in the near future.Cameron picked his brother’s name which means ‘God is Gracious’ and it also means warrior. Evan has truly lived up to his name. He is a warrior who continues to face his battles with a smile on his face and emotionally touches everyone who comes in contact with him.To learn more about his journey, please visit the blog that Evan's mom continues to use to so lovingly chronicle his story at www.radiantwarriorspirit.wordpress.com. To view Evan’s story on YouTube: https://www.youtube.com/watch?v=eHiWsjUCCbQ&feature=youtu.be “LIKE” Evan’s page on Facebook: www.facebook.com/Radiantwarriorspirit Show support for Evan by tagging #radiantwarriorspirit Email inquiries can be directed to: [email protected]’t be afraid for I am with you. Don’t be discouraged for I am your God. I will strengthen you and I will hold you up with my victorious hand. – Isaiah 46:10