When my life changed forever

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My son, Lathyn, was born May 2014, was diagnosed with Dyskeratosis Congenita July 2015 and passed away from it September 2015. His symptoms started at around 6 months which was a developmental delay, so he had an MRI done that showed he had vanishing white matter disorder and was put in physical therapy, occupational therapy, and educational therapy. At about 9 months of age he started to have leukoplakia on his tongue which would bleed a lot that did not ever go away.  After he turned 1 year old he had a G-tube put in because he wouldn't eat anything and was considered failure to thrive. After the surgery he had a lot of blood drawn and was determined that he had a platelet count ot 10,000. Numerous blood tests were ordered one of which determined he had a DKC1 gene mutation. To diagnose him with DC his father and I had a blood test done which showed his father was normal but that I have the DKC1 gene mutation. Within that time he had also started having seizures and had a port put in for his weekly blood and platelet transfusions. We were told he had the most severe case of DC ever noticed. He started to go down hill real fast where he passed away at our home in my arms.