“435 Days of Lessons: Give back. Give hope. Give Love.”
At their 20 week ultrasound, Becky and Greg Ortyl were told their son had a rare and complicated heart defect. They were devastated, scared, and confused and for the next 20 months, they would be fighting an exhausting, but so very important and rewarding, battle for and with their son.
On March 10, 2011, Oakes Lee Ortyl was born. Oakes, a name that’s synonymous with his and his family’s strength and endurance, was quickly nicknamed “Mighty”. At only 12 days old, he endured his first open heart surgery and complicated trachea repair which was quickly followed by a second heart surgery.
Though his surgeries were successful, his veins were too narrow to bring the necessary oxygenated blood to his heart. He was diagnosed with Pulmonary Vein Stenosis and the only effective treatment in his case was a double lung transplant. A successful transplant was followed by a series of setbacks. On June 6, 2012, after a courageous battle Oakes received his angel wings.
Through the journey, Becky maintained a blog, www.babyortyl.blogspot.com which allowed family, friends, and strangers (over 7,000) to learn from her and Oakes as they dealt with the trials of a life in the Cardiac Intensive Care Unit. Every day for the 435 days Oakes was in the hospital she would track vital signs, get briefed on changes in his condition, research medicines, procedures, techniques and terminology the doctors were employing to treat Oakes. She was an advocate, fighting for Oakes and eventually turned into a mentor to all the other mothers who found themselves in the CICU with their children.
She realized quickly that each family was struggling with a lot more than complicated medical issues. The financial strain of medical bills (Oakes’ was close to 3 million) was just the beginning. Most families lived out of town- parents often split up to care for multiple children. They lived out of hotel or hospital rooms, or when lucky, the Ronald McDonald House. Some lost their jobs and homes, bills went unpaid, birthdays went unnoticed, life as they knew it came to a halt.
At a time when so much was weighing on her heart, Becky chose to GIVE. She wanted to support the community around her and help ease the burden on families that would also find themselves in the CICU. So, Mighty Oakes Heart Foundation was created.
MOHF’s mission is to raise money for congenital heart defect research and to support families affected by this disease. Support is personalized for each family’s needs to include mortgage payments, hotel arrangements, transportation, groceries, and childcare. When so much focus is needed and given to heal sick heart babies, MOHF is committed to recognizing and supporting those families’ needs to endure their personal journey. Becky says, “We are giving other families the priceless gift of HOPE and showing them the power of LOVE!”
Through her rare life experience, she has become a hero, mentor, and example of how to Be Mighty!
For more information go to: http://www.mightyoakes.org