Ulani – Oculofaciocardiodental Syndrome (OFCD), Bilateral Congenital Cataracts and Glaucoma

ulani1

Ulani, was born with a extremely rare syndrome called Oculofaciocardiodental Syndrome, or OFCD for short, which caused her bilateral congenital cataracts and glaucoma.

It is so rare, that as of 2007, there were only 20 known cases in the world.

On top of that she also has Lennox Gastaut Syndrome, dysphagia, global developmental delays, learning disabilities, a feeding tube, chronic lung disease due to lung damage due to chronic aspirating, moderate bilateral hearing loss…….just to name a few.  It took us 4 1/2 years to get any answers.

ulani2croppedDespite what she has been through, she is always a happy kid, and her super power is that she tends to rub that happiness off on others.  She always makes an impact on the lives of the people that she encounters.

ulani with helmetedit

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