Nikolai tested positive for MPSII, Hunters Syndrome. A rare disease that shows itself in a form of childhood dementia.where his body is unable to break down certain substances, which leads to toxic build up in all his cells, organs, & brain, leading to the inability to talk at all, walk, eat etc. Its progressive with no cure. The FDA just approved a treatment in the last couple months, that will be weekly enzyme replacement for the rest of his life, to prevent future deterioration. As we now will be focusing on anything we can do to help him hold on to the abilities he does have, love him the best we can, even if his life may be cut shorter than we want.

Continue to carry us in many many prayers, as we face the future of endless appointments, therapies and unknowns with our sweet bubs. Any support or sharing our story would mean the world as we work to give Nikolai the best chance to grow and heal.