Becky and Greg Ortyl of St. Louis, MO, welcomed their son, Oakes Lee, to this world March 10, 2011. Although Oakes was perfect to them, he was born with a congenital heart defect (CHD). During his short 15 months of life, he endured countless procedures, including two open-heart surgeries and a double-lung transplant.
The Ortyls were fortunate to know about Oakes’ heart defect before he was born, but there was so much they didn’t know regarding congenital heart defects. For example, the heart is formed by seven weeks gestation, even before many women know they are pregnant. Most people do not know that congenital heart defects are the most common birth defect, occurring in about 1 out of 100 babies: 40,000 babies a year in the US. For every one child with cancer, there are 60 children with CHD. Most CHDs have no known cause and occur in families like the Ortyls, with no family history of heart defects and who have had other healthy children.
Throughout Oakes’ life, the Ortyls felt very blessed to have so many resources and such wide-ranging support from family and friends. As they learned more about CHDs and the community of families impacted, they felt compelled to help. And so, Mighty Oakes Heart Foundation (MOHF) was formed.
The vision at MOHF is families facing congenital heart defects have the freedom to be a family and have hope amidst the chaos. Together with partnering hospitals, MOHF is striving to make this vision a reality by offering financial and emotional support to families who have children with congenital heart defects.
The support they offer looks different to every family they touch. Every week their Grant Committee works with individual families who apply for assistance to determine what their biggest stresses are and then work diligently to alleviate them. For one family, it was providing a deluxe size stroller that can hold a ventilator, tube feeding pump, and all the medical supplies needed for their toddler who is dependent on these machines so that the family can go out with him. For another, it was providing an extra oxygen tank so a teenage girl could have one at home and one at school. Often, it’s paying the mortgage, a family’s largest expense, so parents can be at their child’s ICU bedside and not have to worry about making ends meet.
MOHF also impacts hundreds of families through their Community + Hospital programs. For example, every year, MOHF sponsors Camp Rhythm, an overnight camp outside of St. Louis, for children who were born with a heart defect. They donate children’s books, therapy equipment, musical instruments, and Boppy pillows to partnering hospitals. They also sponsor parties and events at the hospital for in-patient families – this year, they collected over $20,000 in gifts for families during the holidays. In the past year, they have also started making custom necklaces, with the sweetest fingerprints, for bereaved parents.
Most recently, as a response to Covid-19, MOHF launched a new initiative, MightyTogether, offering hospital-wide assistance within partnering hospitals to ALL in-patient families – not just heart families - and staff alike.
The Ortyls know firsthand the stress and fear that can consume you when your child is critically ill. They also know the power that comes when one feels supported and has a heart full of HOPE. This organization, which was started here in St. Louis as a way to give back and honor their son, has grown into a nationally recognized non-profit, impacting thousands of families annually.
To learn more, visit www.mightyoakes.org or find MOHF on Facebook and Instagram.