The first of our little heart warriors is Vidar. It’s been a dream of the Charlie Girl heart family to find and support other children embattled by congenital heart defects. Vidar came to us by way of a compelling letter from his parents, Joel and Emily. His parents describe him as a “beautiful little guy with big eyes and pouty lips and a full head of hair.” Our Charlie had a peculiar charisma which, beyond empathy for her health, drew support to her from everyone she touched. We felt that same pull from Vidar. We instantly wanted to help.
Vidar is named after a son of Odin, renowned for his fight and survivability. He’s aptly named. From as early as Emily’s 12-week prenatal ultrasound, Vidar’s survival was in doubt. We’ll detail a few of his many obstacles, but before we do, we’re very pleased to announce that Vidar is home with his family, and no longer pinned to a hospital bed by the myriad of necessary, but nightmarish tubes and wires of life support. He’s home with his family, being held, and supported, and this is a very great thing.
The road home was not easy, nor is it the end of his challenges. His official diagnosis is: Idiopathic Hypertrophic Cardiomyopathy. His heart walls were too thick to fit blood in his heart chambers and lungs too cloudy even to be considered a transplant candidate. He spent the first few months of his life, in and out of surgeries and procedures, fighting every day for what most of us take for granted. In the weeks leading up to his eventual release from the hospital, one of his father’s greatest joys, was finally seeing the lower half of his son’s face, as feeding tubes were removed. It was like a second birth, when a child emerged from the medical viscera.
He’s home now, and his heart is looking healthy, but challenges remain. Feeding without tubes is a challenge for Vidar. His family is hard at work, developing routines and strategies to continue Vidar on his way toward growth and health. In the thick of the fight, his mother, Emily, adopted this thought: Replace your fear with love. It’s given them strength when the reserves are low, and the tides of doubt and disaster are high. It continues to be their prevailing thought, even as the light of hope and health begin to dawn.
You, as donors, have been part of that light, part of that love. You’re a huge help to a second great challenge for families with heart warriors. The life-saving medical treatments cost dearly. Add to that, parents are parents first, and employees second, particularly when every day is a desperate fight for life. Bills come in, but paychecks don’t. Without support, the situational and financial stress to the families seems insurmountable.
We’re so thankful that you’ve chosen to support Charlie Girl Foundation, and beautiful heart warrior’s like Vidar. Take time this week, to pray in love, for Vidar’s continued progress. Keep checking in with us, for future updates, for news on this year’s Benefit Dinner (September 20, 2018), and for an introduction to a second heart warrior, who you’ve also helped to support.