Hi, I am Katy Lou Mileti Molyneaux, that is the shorten version of my name. Some thing has to be big about me, I have always been undersized. I am almost 7 years old. Let me start at the beginning, I was 6lbs 7oz and full term. My Mommy was sick all the time she carried me. I was diagnosed with SOD bythe time I was 2 months old.

My Father has the coloboma of the right eye and so does my younger brother. So part of my disease is hereditary. At four months the social services removed me from my parents care (failure to thrive was the reason they used) and placed me in five different foster care homes in 3 months (none of the parents knew what to do w/ me either) My Mama got me through the court system (she is also my aunt). It took her until I was 18 months old and only 9lbs before the doctor would send me to a gastrointestinal Doctor. He found that my involuntary muscles for my stomach did not work and that I had 8 ulcers. My stomach emptied at less than 1/2 of tsp. an hour. So I was never hungry, but always in pain. I am unable to tolerate milk soMama started giving me pedisure, it was not enough so I am now on ensure plus. I drink 4 cans a day, sometimes more. Because of the pain I was in I cried (screamed) constantly and when I started teething it was worse. I hated food, it was painful. I broke my 2 front teeth off about 5 months, after they came in. I would only try to chew on hard toys.

I would pull out all of my hair, so Mama had to shave it off twice to get me to stop. Then I tried head-banging, so I had a padded hat to wear. I hated that so I stopped head-banging. My habit now is to put my hand behind my head and cover my ears w/ my arms. I like to move my head back and forth like Stevie Wonder does at times. We are trying to stop doing these things.

I started to walk and cruise at about 26 months, but then I got sick and forgot how I guess; because I didn't learn to walk until I was five years old. (see my picture - I was mad that Papa was making me walk to get to him) I have been getting therapy almost all of my life because Mama contacted the blind association and had a therapist working with me on the tactile problems since I was born. I am not too defensive, except with food. I still don't like to eat or drink that much.

I started school with other kids when I was five, before that I had all my therapies at home. I was always getting ill around other kids. At four I was only weighing 19 lbs so now I am up to 34 and 1/2 lbs. I am not a starving child from a third world country, I am a child with SOD. Most Doctors think that SOD is only vision, but we all know better.

I have always loved music and singing and I can carry a tune very well. I and have a great memory for the words, too. Music was the only thing that would calm me down when I would hurt so much. The Doctors tell me that I am totally blind, but Mama and my vision teacher think that there is some site in the lower hemisphere of my right eye. One eye specialist thinks there might be, but it is intermittent. I have improved a great deal in my speech and I am beginning to use pronouns correctly, but I give Mama a hard time (it is fun to pick on her). She makes me ask correctly for my special treats. I like sweet-tarts best. I am in the severe & profound classes at school which is reverse inclusion. It is the only school where all of the therapists go to each day. Plus I have an aide part of the time. Mama wants more therapy on a one-on-one basis for me. She is talking about home schooling again for me. I usually do so much better at home then at school. We have been doing a lot of play therapy this summer.

I have 3 new Doctors and they are talking about some meds for me. I have never had any meds before, other than for my ulcers. You can see by my pictures that I have a big sister Sammi, she is only 3 months older than me. She loves me and so does my Papa. I have a pony named Rascal and I love to ride him. I like to play in my ball park and tell stories when I am at the table. Papa says it is my way of trying to get out of eating. I like to repeat everything people say, so you have to watch what you say around me, I am a good mimic. I love to have Tubby-Time, because I love the water. I like to laugh and I like it at parties when everyone else is laughing. I like the noise of thunder-storms and fireworks, too. Mama, Papa, and Sammi say I am unique. I like that, because I am Special, and so are You!

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