I am Lucy's mother, Lesley and this is her story.

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Hi! I am Lesley and my daughter Lucy was diagnosed with Soto's syndrome when she was 7 months old. She was born 4 weeks early and was 7 lbs 8 Oz and had to stay in the nicu for almost 2 weeks. She failed the test that they use to test the babies muscle tone and at that point I knew something was not right especially her being my 3rd baby. As we went to the pediatrician and her neonatologist appointments, their concern of herrors height, weight and head circumference grew more with each visit. At 3 months old her pediatrician ordered a head ultra sound and from there we were sent to children's hospital in Little Rock, AR to have an MRI. When the results came back her Dr was not sure what to make of them and then referred her to a neurologist who after several appointments, decided to test her for any genetic disorders which all came back normal. The next appointment however, she told me about Soto's syndrome which they had just gotten the ability to test for. After researching this possible diagnosis I knew in my heart that that was what she had. Neither me or my husband have any family history of it and with her being our 3rd child it was a bit alarming. But determined to do everything we could to give her the best life possible, we asked for a referral for therapy. And she started at 7 months and a week later we got the call that she did indeed have Sotos. Since then she has hit all her milestones and continues to, just in her own time. She is developmentally behind but cognitively on track. So her main issues are her gross motor skills and speech. But through a lot of love, support and guidance she has made huge strides in her development and I truly could not be prouder. She is 3 years old now and at her last Dr appointment we were told she was on tract for her age except speech but that she was not that far behind. She is the light of our lives and my husband and I agree that we have never met a more happy child. She brings joy to us everyday and each day she is saying something new and hitting another milestone. I cannot imagine my life without her and would not change one thing (or gene) about her!