On our trip to Boston we found that there was a doctor right here in NYC at Columbia Presbyterian. The Dr. in Boston worked with this Dr. quite often and felt that he was more than capable of taking care of Laurens case. The Dr. in Boston continues to stay in the loop of her progress and I still hold his words to me close to my heart. The Dr. we have here in NYC has been more than dedicated to making out daughter well, he has gone beyond measures of time to be available to monitor her eye pressure, including meeting us at a rest stop on the NY Thruway, operating on Fourth of July, Halloween, etc we are so grateful to have him right here in our own back yard. Some people are not so fortunate, we have heard stories of family relocation, or just singular separation of a family member and child to live somewhere near a doctor and commute back to see their families.
Lauren lacks the iris part of her eyes and has underdeveloped retinas; these are traits we later confirmed through genetic testing to be diagnosed as, Aniridia. She secondarily also developed Congenital Glaucoma as a newborn. Two very rare eye diseases for a newborn to be diagnosed with, (1/100,000+). Due to this, her vision is significantly impaired to the point of being diagnosed as legally blind.
I am thankful everyday that she can see, so its VERY VERY NEAR SIGHTED and so, she will need really BIG PRINT, who cares, she sees my face! For now she is a close talker, but she is so cute, who caresin time she will learn all about personal spacelol!
So, what does this all mean well, due to Laurens lack of iris, it cannot help regulate the pupil size(very large and dark) and the amount of light getting into the eye. Also, her eyes did not develop proper mesh work in the eyes as to drain the inter-ocular fluid our eyes produces every day, so she had to endure 14 eye surgeries to implant/maintain a drainage system into her eyes. It is important to keep this fluid pressure down in order to preserve the vision that she does have. We do this with regular monthly visits to her doctor at Columbia Presbyterian Hospital, Eye Institute.
Please help me to support their causeLaurens causethere is a hero in all of you.! Thank you!