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.
Despite 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.
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She is the sweetest, toughest little one.
Bless her heart
I love you Ulani your such an amazing lil girl
So glad I have met your thru your Aunt Ann, who loves you so much!
Aww, such a sweetie! I am sending thoughts to her. I am 34, have OFCD, and wasn’t diagnosed until I was the age of 27! Keep your chin up and believe there is a beautiful purpose for your life.