oah was diagnosed with infantile Tay Sachs disorder prenatally. It is a neuro-degenerative genetic disorder that is considered universally fatal by the age of 4. As soon as he was born we left our home in Seattle to pursue a bone marrow transplant at Duke University in North Carolina. This treatment was dangerous, but had the potential to prolong his life and reduce his disability. He was transplanted within the first month of life he was less than 6 pounds. We stayed in North Carolina for 5 months.
As soon as we got back to Seattle we started getting therapeutic services through Boyer. Therapists visited our home when Noah was still too immuno-suppressed to be out in public much. When he was 1½ he was well enough to start playgroup and we joined Mary Ellen & Tsege’s classroom.
Noah is now 2½ years old and he has many challenges, but he is doing much better than could be expected with a Tay Sachs diagnosis. He gets physical, speech, occupational, vision and feeding therapies all at Boyer.
Although he does not speak much, he understands a great deal. He is guaranteed to break into a huge smile if we tell him that we are going to “school” or that he gets to play with one of his therapists. We are so grateful for the scaffolding of support that we as a family have been given by all of our friends at Boyer!”
–Shoshana (Noah’s mom)