I have been inspired to run after being connected with Elodie Fucile and her family. Her story has inspired me to do everything I can to support BCH and all the amazing work they do. It was determined that Elodie had Tetralogy of Fallot prior to even being born and would require open heart surgery to repair it. Tetralogy of Fallot is a congenital heart defect in which 4 abnormalities are present: there is a hole in the heart allowing oxygenated and un-oxygenated blood to mix, there is usually a bad pulmonary valve that needs to be replaced, narrowing of the pulmonary artery and finally a thickening of the wall of the heart from having to work harder to pump. It was also confirmed after a fetal MRI that Elodie also had duodenal atresia. This is a narrowing or blockage of the digestive tract just after the stomach. Nothing would be passing through her system without a surgical repair. So now Elodie was faced with 2 confirmed surgeries to occur within her first few days and months. Which came first would be determined when she was born and if she came out a pink or blue Tet baby. Elodie's mother was set up at Brigham and Women's Hospital, which is attached to BCH, and went in for weekly ultrasounds and tests. Kathryn made it one day before her due date. Elodie was born on 8/22/15 to a room with 13-14 doctors and nurses present with a mini ICU set up and a team of doctors from Children's... she was a pink baby meaning she could wait until 3 months for her open heart surgery. Elodie spent 5 days in the NICU at Brigham and Women's where every test imaginable was run on her. They ended up finding she had a tethered spinal cord. Surgery would be required to repair it. It could wait until after her other two surgeries. Elodie's family took her home on September 15 and she would be all theirs until her open heart surgery, which was eventually scheduled for November 30, 2015. The months in between were filled with tests, follow up appointments and preparation. Elodie and her family spent her first Thanksgiving at BCH and they went all out for the families with a delicious dinner down in the entertainment room. Elodie had open heart surgery the Monday after Thanksgiving, Nov. 30 and was home that Saturday! March 1, 2016 was her spinal cord surgery followed by a few days in the hospital for recovery. June 6, 2016 was her fourth and final surgery. Elodie's father shared:
"Throughout the entire process and our time at BCH the effort they put into caring for us as a family has been amazing. I will never be able to explain how it feels putting the most precious part of your life into someone else's hands but they never once let us down and for that we will be forever grateful. Elodie is still and will be a patient for life due to her heart condition but at this point it's all follow-up appointments and continuing care. BCH is the most amazing place on earth and we want to do whatever we can to thank them for saving our daughter."
Today, Elodie is a vibrant 8-year-old 3rd grader! Her father shared: "She is crushing all of her milestones and very much enjoying school and other fun activities. Currently, she is doing tumbling, playing violin, performing in a drama program, and singing in the youth choir." Elodie is an avid reader and Harry Potter fan, already completing the entire series! She also enjoys telling jokes and loves her cat, Sprinkles.
Boston Children's has also had a great impact on my life. I have grown up with a Vascular Anomaly on my forehead, it has required many surgeries from the Interventional Radiology department. With the wonderful care of my doctor and the nurses, I was able to continue my passion for education and athletics. I hope to raise money for other children whose lives are changed by the hospital every day.
I hope you will support me by donating to the Miles for Miracles team in support of the amazing work BCH does day in and day out. Your support will help provide earlier diagnoses and more effective treatments—giving hope to kids from around the corner and across the globe. Your gift of any amount will make a real difference to children battling illness. Both Elodie and I thank you!!