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Jacob was born with low tone, genetic disorder “features”. We were told he wouldn’t walk or talk. He is cognitively delayed, has low tone, failure to thrive and an elevated diaphragm.

At first, they told us they thought he had Joubert syndrome, but as he matures and has had testing, they’ve ruled that out. His Geneticist says it may be so rare, that he is the only one with this syndrome.