Graysen was born August 7, 2017, what appeared to be a perfectly normal little 9 pound baby boy. He had 10 fingers and 10 toes, one nose and two eyes. Everything you would expect in a healthy little baby. But by the time he was six months old there were serious signs that something significant was wrong. Graysen had not grown very much during that time. He got sick easily. All winter long he struggled with colds, ear infections, and lung congestion.
The doctors finally took an x-ray to see if the little guy had Pneumonia. Instead they discovered a diseased enlarged heart and rushed him to intensive care. He spent two weeks in the hospital that time as they sought to help him regain his health, and discover what the cause was. They had a diagnosis. It was called hypertrophic cardio myopathy. The thickness of his heart muscle was huge, and very abnormal for a baby. They knew not what was causing it.
He was able to return home and spend the next three months or so trying to get healthy through lots of family love, prayer warrior communities all across the country, several types of therapy, and a scientific concoction of powerful meds.
Unfortunately, in June he came down with what we would all call the common chest cold. Within a few days Graysen found himself in the hospital for the second time fighting for his life. A muscle biopsy discovered a rare and deadly muscle disorder. During a two week period, while in the children’s cardiac intensive care unit in Columbus, Ohio the disorder ravaged his heart, lungs, and intestinal system. He passed away in the arms of his mother on June 22. He had valiantly fought the good fight.
The story of Graysen is a story that goes much more deeply than a tale about illness and disease. He was one of the happiest little guys you would ever meet. He was so amazingly curious about everything around him. He could melt your heart with his “life is wonderful” spirit. His eyes would penetrate into your very soul to let you know that he trusted and believed in you. For being just a ten month old, sixteen pound little kid he showed more courage then the most seasoned warrior. He touched many lives in his short time on earth and all those who had the privilege of knowing him first hand have been forever changed.
Someone has said, “It’s not the amount of time you spend on earth that counts. It’s what you do with that time that makes a difference.” Graysen used the little time God gave him on earth to make a big difference in many people’s lives and we are forever grateful. We miss you deeply our little Superman!
Graysen's Medical Costs
While Graysen was at home for the three months before he took sick for the last time he had physical and occupational therapists come visit him in his home. He was on a feeding tube all that time with several specialized baby formulas prescribed. He visited his cardiologist and several other specialists about every other week and began attending a feeding clinic sponsored by Children’s Hospital. His medications were administered through his feeding tube pump.
Graysen’s first two weeks in the hospital included three days in intensive care and 10 days in Children's Hospital in Columbus. A team of specialists from three different units - cardiac, neuromuscular, and genetic disease - sought to discover the what, why, and how of his illness. This stay in the hospital cost over $139,000.
His second stay in the hospital kept him in intensive care the whole time. Several medical procedures were necessary to try to get him healthy again. He was intubated by the fourth day and given immoblizating drugs to keep him comfortable. About the seventh day he went into cardiac arrest, the first of three times. On the eleventh day the doctors shared that there was little more that they could do for him. He quietly passed away two days later. That hospital stay cost at least $249,000, and all the bills have not yet been finalized.
How Your Gift Helps
We chose to raise $9000 to cover a portion of the medical costs not covered by insurance. This will enable Kerri and Bob to breathe easier as they figure out what life looks like after Graysen's passing.
Thanks in advance for your generosity and kindness in loving Graysen and his family!
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- Deb Schack
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