Team Wonderheart PDX is walking for research!
It's that time of year again! Team WonderHeart PDX is raising funds for critical Congenital Heart Defect research! Congenital heart defects (CHDs) are the most commonly occurring birth defect, affecting approximately 1 in 110 babies born, or a child born every 15 minutes. CHDs are the leading cause of birth-defect related mortality. In 2019 our grandson Milo was born with a complex single ventricle heart defect. Because of the advancement of research and treatment for congenital heart defects (CHDs), Milo received medical and surgical interventions immediately after birth. Without these, he would not have survived. Because there is no "cure" for a CHD, continued research and advancements will impact Milo's quality of life as he grows and develops, for the rest of his beautiful life. Raising funds for CHD research is critically important to all Heart Warriors, like Milo, and Heart Angels, and personally meaningful to my family.
We are excited to be participating in the 2022 Portland Congenital Heart Walk and want to take this opportunity to give you, our friends who have been kind and generous supporters, some updates on Milo’s exciting toddler life and health. This update was written by Milo's mom, Rachel, and I wanted to share it with you.
"Milo has continued to learn and grow this last year. In the winter, he took 6 weeks of daily ISR swimming lessons. At the end, he was proud to complete the checkouts including “falling” into the pool upside down wearing regular clothes, shoes, and a diaper and successfully coming up into a backfloat! After many discussions with his cardiologist and a test flight to San Diego, our family was able to travel to Ko Olina, Hawaii for 3 wonderful weeks in May. We enjoyed lots of beach time, playing in the sand, and time at the pool where Milo continued to practice his swim which he calls “whale” and his very important backfloat which he calls “starfish.” Throughout this year Milo has loved going to speech therapy to play with Miss H and her toys. He is settling into the preschool-age class at our church. And he likes camping in our trailer or any excuse to sleep in a bunk bed.
Milo’s overall health has been stable and his oxygen saturation remains 75-85%. Milo’s cardiologist has started talking with us about his third and final planned open heart surgery - the Fontan. He has an echocardiogram and is re-evaluated every 6 months. If his oxygen levels remain stable, the Fontan can wait until next summer or maybe even the next. The Fontan will complete Milo’s unique single-ventricle circulation. If he tolerates it well, it may improve his oxygen saturation to over 90%. Unfortunately, the Fontan has many negative side effects including Fontan Associated Liver Disease and heart failure. Eventually, people living with single-ventricle heart disease, like Milo, will need heart transplantation."
This is why we are so passionate about walking to raise money for The Children’s Heart Foundation. The mission of The Children’s Heart Foundation is to advance the diagnosis, treatment, and prevention of congenital heart defects (CHDs) by funding the most promising research. It’s our daily hope and prayer that new treatments will be available for Milo when he needs them. And funding research is one way to move our hopes and prayers into action. The Children’s Heart Foundation exists to make sure babies and kids like Milo - and everyone impacted by CHDs - live long and healthy lives."
Team Wonderheart PDX will walk at the Oregon Zoo on October 8th. We have set a team goal to raise $2500 for research and we would love your support! Please consider joining us at the zoo, I promise it will not rain! Or consider making a donation so that together, we can drive critical CHD research funding! Every dollar counts, yours is important!
Thank you always for your interest and your support!
Becky Byrne, Milo's grandmom
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