Geared toward high schools and colleges, this yearlong, student-led fundraiser culminates in a day of dancing. Fundraising helps kids at your local Children's Miracle Network Hospital—Boston Children's (that's us!).
It's hard to believe that the twins are turning 5 on April 27... and I'll be 38! I have learned that every birthday is a privilege. My greatest gift this year is that I get to celebrate Evan's 5th birthday, something we weren't sure we'd get to see. Only 40% of half a heart kids get to celebrate their fifth birthday. Fortunately, Evan has continued to be the warrior he has proven to be. We still have many concerns, like a leaky tricuspid valve, and new arrhythmia issues. And of course a transplant will be in his future. Right now, he is a healthy rambunctious boy, wrestling with James on the couch, climbing trees, and cycling around the neighborhood. At first glance you would never know that he has only one pump in his heart, verses two in a normal heart. He does slow down, and usually hangs back with me on hikes with the family, as his siblings race ahead. He's on a few medications which help to keep his arrhythmia issues at bay, and thankfully they have worked so far.
In addition to the FORCE registry, which we have raised a significant amount of funds for, thanks to all of our amazing friends and family, Dr. Rathod is also spearheading the Fontan Clinic at Boston Children's. This will be a big step in the direction of "whole body" care for Evan, kids and adults living with half a heart. For patients like Evan, their heart problems lead to other issues like liver failure, neuro development delays, and in addition, nutrion and exercise is vital for kids to excel. In this clinic, there will be cardiologists, nutrionists, hematologists, neurologists, who are all familiar with Evan's heart anatomy, so they can treat him specifically related to his heart disease and how this affects the rest of his body. It will be a one stop shop for Evan, and all patients like him. This collaboration of doctors at the Heart Center at Boston Children's will be able to make better treatment plans that are specific to Evan's anatomy. It will be life changing.
But, this cannot be accomplished without enough funding. Dr. Rathod has the full support of Boston Children's to build this program, but without the help from donors, it will be delayed. For example, we need money for nurse practitioners, and data entry employees.
If you are able, please consider donating to this cause. It will directly benefit Evan, and every child born with half a heart. It will benefit Evan as an adult as well. Even when he grows up he will continue his care at Boston Children's as they have an adult CHD program.
Evan is here today because of the generosity from so many people over several decades that lead to medical advancements and improvements. If he was born in the 80's or before he would not have had a great chance at living past 1. Today, his chances at living longer are much better, but there is so much more to be done to ensure he can live into adulthood. And as his mother, I want him to live to 102. Please help me make this possible for Evan, and for every baby born like him.