Henry

If you’re here it’s because you know or have heard of Henry or Cosmo or both. Let’s start with our little hero, then we’ll tell you about a larger one. Henry was born October 14, 2016 as a seemingly healthy baby. On the second day of his life, right before he was released to go home with mom, dad, and big sister, his 24-hour newborn screen revealed low blood-oxygen saturations. Henry was rushed to Children’s Hospital in Minneapolis where he would be diagnosed with critical aortic stenosis – this condition would later evolve into a Hypoplastic Left Heart Syndrome (HLHS) diagnosis. Henry spent the first 55 days of his life (and 64 days overall) living inside Children’s. He has undergone two open heart surgeries, two Cath-lab balloon procedures, one diaphragm surgery, and endured countless x-rays, I.V.’s, medications, sedations, echocardiograms, and so many other nuances associated with modern medicine. Not that we are complaining – in addition to his incredible little fighting spirit, modern medicine is the reason Henry is here with us today. About 30 years ago, most doctors would have advised his parents to take him home and let him pass away peacefully. Thanks to advances in medicine we have much improved odds at providing him with a mostly normal childhood and early adulthood. After that is where the water becomes more murky. That is why we, and heart families everywhere, need your help. Henry will have one more scheduled surgery to his heart around 3 years of age which will hopefully allow his heart to take him into adulthood. Beyond that is anyone’s guess, we know his heart won’t last forever with this physiology, maybe 30 or so years IF he is one of the lucky ones based on past results with this procedure. After that it will be transplant, anti-rejection drugs, and all of the issues that comes with that. The average successful heart transplant lasts 10-15 years (and that’s the successful ones). This outcome is not good enough for Henry. It’s not good enough for any otherwise healthy child who had the misfortune of being born with an incomplete heart. Henry’s family is hoping that between the years of his final surgery and the time he needs a transplant, that modern medicine will once again evolve and provide people like Henry with an option that will allow him to grow old and live a more normal life. Heart research is underfunded and doesn’t receive the attention of many other childhood diseases. However approximately 1 in 100 babies is born with some kind of congenital heart disease: some are mild (such as a valve issue that doesn’t show up until later in life) and some are severe – like Henry. More resources are needed to understand these issues and provide better options for all heart kids. There are so many promising ideas out there currently in research: mechanical pumping mechanisms, pig hearts, improved transplant procedures, etc… Simply stated, these ideas need time and more funding to become a feasible reality for kids like Henry. We are steadfast in our belief that our donations can improve the research and make a real difference in Henry’s life. That is why we are so passionate about this. 

This passion was not lost on Cosmo, and he is the second part of our story. Cosmo works with Henry’s mom Stephanie at Brandpoint in Hopkins, MN. Seeing the love she has for her son, the dedication she has to providing him with a good quality of life, and the hope she has for the future; Cosmo was inspired to do take on an incredible challenge in honor of Henry. An avid workout enthusiast, Cosmo has decided to dedicate his latest Ironman competition to “Hank the Tank” as he calls him. He will be participating in the National Long course championship(Ironman) on September 16, 2017 in Oklahoma City, Oklahoma. The contest is a 2.4 mile swim, 112 mile bike ride, and 26 mile run. Cosmo has structurally no right knee from a martial arts injury and has been diagnosis with arthritis. The Doctor said I was done, and wouldn't run again. Since his "diagnosis" I have 100 miles running and am determined to prove him wrong.”  Cosmo and Henry clearly share a spirit of determination that is truly inspiring. 

No matter the Ironman outcome, we as Henry’s family are incredibly touched by the the generosity and love shown by Cosmo as well as so many of our other family, friends, and neighbors. We are asking that you take the time to keep Henry and Cosmo in your thoughts and prayers as they continue each of their journeys; and, if you have the means, please consider donating to congenital heart research. After all, if we didn’t have heart research from a previous generation, we wouldn’t have Henry here with us today. Let’s make sure Henry’s generation is around to see a cure for HLHS kids everywhere.  Thank you. 

 

 

 

 

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Henry