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A Legacy in the Making


My Son, Ryker Jason Warner (Miracle Ryker) was born on March 7th 2012. Prenatally, during a routine 20 week ultrasound we discovered that my unborn baby boy had a very serious condition called Heterotaxy. When Ryker was 5 days old we flew him by air ambulance from Salt Lake City, Utah to Boston, Massachusetts so he could get the help he so desperately needed. Within the first 4 months of Ryker’s life he endured 4 open heart surgeries, by 5 months an intestinal surgery, by 6 months cardiac arrest & 3 days on ECMO, by 7 months old we were given the terrifying news that Ryker also had PVS. The hospital days turned into months & by 10 months old Ryker had faced numerous cardiac catheterizations & had been denied by the heart transplant team.

At 11 months old after 341 days in the hospital our sweet boy was finally discharged for his very first time, unfortunately with this discharge came hospice care and we were told he had maybe 3-7 days left with us. Although I was in full denial & refused to believe what was really happening, we vowed as a family that every day would be cherished to the fullest. We were blessed enough to keep Ryker home with us for 8 full weeks before he gained his angel wings. It was the absolute best times of my life. Times our family will never take for granted!

During Ryker’s sweet life he never stopped smiling, no matter what he went through he smiled, interacted & spoke with his eyes in ways I can never explain. Ryker had the sweetest spirt and touched so many lives in ways you could never imagine. He had a following and support system that spread across the world! My sweet boy had touched more lives in his 14 months, than most do in a full lifetime, he had created a legacy all his own and we knew as a family that it was now our turn to make him proud of us and our accomplishments and we wanted to do it all in his name.

On July 2, 2015 (2 years and 2 months from the day we lost Ryker) our dreams became reality and the Miracle Ryker Foundation officially became a federally recognized 501(c)3 Non-Profit Organization! I cannot even begin to express the joy and accomplishment that came with this! We have now teamed up with a group of amazing people and incredible doctors from Boston Children’s hospital to raise awareness and funding for Pulmonary Vein Stenosis (PVS) the horrible condition that ultimately took Ryker’s life. We hope to one day help save another family from the same horrible fate we and so many others have had to face.

Charity work is not always the best way for all grieving parents to cope, nor is it the only way to create a legacy for your Angel. Everyone has to find something for them that helps them get through each day. I just know for me, having this Foundation has done more for me than I can explain. It is something that, we as a family, have worked so hard for and in a way it’s what makes me feel the very closest to my baby. Ryker’s legacy is all I have left of him, and for the rest of my life I will do all I can to make him proud of choosing me to be his Mom.


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Heterotaxy Connection

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84020

 

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