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His little squeak at the end 🥹 Alexander was born with a disease called Dyskeratosis Congenita. The disease is an “umbrella” term like cancer is to lymphoma (if that makes sense..) The more specific name of his disease is called Hoyeraal Hreidarsson Syndrome with the most severe and rare genetic mutation of the syndrome, TINF2. This disease JUST BEGINS with loss of cerebral function/tissue, failure to thrive, bone marrow failure, premature aging due to telomere disorder, and so much more. The t
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If you’re new here, Alexander is our miracle boy, shedding light on an extremely rare terminal disease called Hoyeraal Hreidarsson Syndrome. His battle has been fought hard between near death experiences with sepsis, some surgeries, chemotherapy, blindness, restored vision, (thank God) a successful life prolonging bone marrow transplant, and much more. We are so blessed to have him not only with us today but thriving. There have only been very few hiccups since his transplant and we are still in
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