Thank you for visiting our page in support of Team Lexie!
Here we are again! THANK YOU to our family and friends for their donations and support last year. Our inaugural walk last year was such a success - we raised over $5000 for BCH! Lexie was even featured as a mile-marker patient at the half-way point highlighting her patient story and adorable face - we were proud parents for sure! We are teaming up again this year to support the Boston Children’s Hospital Eversource Walk for Kids in honor of our daughter, Lexie (age 2.5).
To recap her medical history and our experience with BCH: Lexie was diagnosed with PAPVR (Partial Anomalous Pulmonary Venous Return) and PAS (Pulmonary Artery Stenosis). Both conditions are forms of congenital heart disease, which in our case, became known after her pediatrician detected a suspicious heart murmur at 3 weeks old. Lexie has since undergone open heart surgery at 14 months old to repair the PAPVR defect (a structural issue where 2 of her pulmonary veins were misplaced, in her case, all 4 pulmonary veins were dumping into the right side of the heart creating extra blood flow requiring that side of the heart to work harder) and over the course of 1.5 years, she’s undergone 5 cardiac catheterizations to balloon dilate her pulmonary arteries to “fix” her PAS. The balloon dilations help to increase the width of her arteries to carry the proper blood and oxygen to/from the heart to the lungs; however, our experience proved that balloon dilations aren’t always enough. At one of her last procedures, they placed 2 stents into her Right main pulmonary artery. The stents are “hard-wired” to ensure the artery maintains the proper width and will require lifelong management including visits to the BCH cardiac unit.
Our last hospitalization for the 5th cath was in January 2018 where we received the best news yet – the procedure was the smoothest we had, with little to no issues, and the results showed that her pulmonary pressures are finally at a “safe” number so that we can wait a year before returning for the next cath intervention! We’ve been very fortunate these last 2 years to have the best medical teams care for Lexie to get her to this point.
Lexie's managed her doctor and hospital visits and "boo-boos" like a champ. Thankfully her condition has never restricted her from being an outgoing, playful, happy toddler.
Thank you for reading Lexie’s story and considering supporting us as we walk to support BCH and the exceptional care they provide to kids and families across the world. We know that money raised will help fund Boston Children’s exceptional care and groundbreaking research that can help every child.
If you’re interested in joining our team, just register within this page.
Jay & Lauren Leavitt (daddy & mommy)