When she was born she looked like a doll in the nursery. Four days later she was diagnosed with cataracts. She just got diagnosed with CS Type 2 in August ’07, just after her 5th birthday and countless doctors and tests later. Sam is a beautiful, loving, strong-willed little girl. She was able to walk, although not very well but began having tremors around 2 1/2- 3 yrs. old. She lost her ability to walk around 3-3 1/2 yrs. Although she does pretty well in her walker and if you put her in swimmies she is able to swim independently and she loves it!! She is extremely shaky now and has been on a lot of different meds for it but none have helped as of yet. She is very smart and funny. She understands everything and although she can only say a few words and a lot of approximations, she can usually get her point across. Sam loves people. She is constantly kissing everyone on the forehead! She loves all her therapies and school (they call her the mayor!) She loves Jake, her little brother who also has CS. She calls him ba-ba for baby! Everyone who comes across Samantha just falls in love with her. She is a very special little girl.

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4 thoughts on “Samantha

  1. Hi Samantha I live in new York on long Island I am the lady who started share and care 34 years ago..I hope you are feeling well again perhaps one day we can meet I live in Valley stream.

  2. About 35 years ago when I became pregnant for the first time, I was concerned that an undiagnosed condition my younger sister had might be genetic, so I convinced my Mom to take her to a genetics clinic. Onky them did we learn that she had Cocaine Syndrome. At that time there were only 28 known cases of children with this disorder . My sister lived to the age of 19 but always slept in a crib and was fed from a high chair. She was a very loving child. I just heard about Jake and Samantha on the news tonight and its the first I have heard of this disorder since my sister’s diagnosis those many years ago. I would like to be of some help in your effort to raise awareness and fund further research if possible. I live in Virginia.

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