babyZENmama

I am a married, 37 yr old mother of a baby girl that had osteopetrosis (OP), a very rare bone disorder in which the bones grow unchecked.

Zoe had a cranial vault surgery in November of 2008 to fix the craniosynostosis caused by the OP. It is rare that such a surgery is attempted prior to the bone marrow transplant required to cure the disorder, but as her brain was severely constricted by the fusing of her cranial plates, it was a necessary risk.

Although it was a traumatic surgery for Zoe, she did recover well though, and in early January of 2009 she was cleared to go through her BMT. Peripheral blood stem cells were used--donated by a fully matched unrelated donor who had registered her DNA on the national registry.

Zoe did remarkably well, with only minor occurrences of GVHD so far. She is thriving and growing stronger every day--but Zoe is blind from the OP-caused bone overgrowth crushing her optic nerves. Also, she is delayed in her gross motor skills as a result of the combination of her medical saga and her blindness.

Thanks for you interest--and please consider becoming a bone marrow donor.

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