Ryker Griess Ryker's BMT

First post: Apr 19, 2021 Latest post: Oct 21, 2021
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Ryker was diagnosed with Failure to Thrive at his one year check-up.  He had fallen below the one percentile for weight and height on the growth chart and his pediatrician was concerned.  We tried a calorie dense formula but didn't make much progress with his growth.  He also would not take food by mouth a lot of the time and feeding could be difficult.  His doctor referred him to Colorado Children's Hospital and that began his journey of trying to figure out why he wouldn't eat and why he was so far behind in growth.  He saw several different specialists and had Intensive Feeding Therapy but no one had any answers for us.  They decided he needed a feeding tube at 22 months because he wasn't getting adequate nutrition.  The hope was that his growth would improve after that.  He did gain weight a little better but nowhere near what the doctors were expecting.  We continued having tests done and seeing different specialists but still had no answers about why this was happening.  He also started having some abnormal blood test results which prompted them to pursue genetic testing to look for answers.  At the beginning of this year they also discovered his pancreas wasn't functioning properly.  In February, we received the results of his genetic testing and it revealed he has a rare genetic disorder called Shwachman-Diamond Syndrome.  This diagnosis explained pretty much all of his symptoms but we learned that bone marrow failure and a higher incidence of Leukemia was part of the syndrome.  The doctors immediately did a bone marrow biopsy which showed there was reason for concern.  After consulting with doctors in Cincinnati, who specialize in SDS patients, and a repeat bone marrow biopsy it was determined that he needed a Bone Marrow Transplant as soon as possible.  That was about three weeks ago and now we are in Cincinnati, where Ryker will be for the next 4-6 months while going through the transplant process.  
Throughout all of this Ryker has remained an active, happy and mischievous three year old little boy. He is full of excitement about the world around him and such a sweet and loving little guy.  If you met him you would have no idea all of this was going on in his little body.  We thank God for the resilience and strong spirit Ryker is blessed with, as well as the support system of family and friends who love him and are praying for him.  

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