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Carter Worthen


Carter is a silly charming outgoing , smart 3 year old . She has lots of courage and strength! Almost always happy! She’ lives with mom dad and big brother and big sister !


Carter was born 11/20/15, C-sec, about 3 weeks early everything seemed great. Couldn’t hand ask for a better baby. She didn’t cry fuss , she slept threw the night right away. Sounds wonderful ! But then she couldn’t lift her head or roll over. Wouldn’t sit up without back support. Never crawled and didn’t walk till almost 3. Not much talking . Struggled with eating solids it was clear there were face amoralities. No neck, it was more than clear something was wrong, different about her. But her doctors just kept saying she’ll be fine she walk and do things when she’s ready She’ll grow into things just wait . Over and over .. I felt like no one cared or listen to me.. I’m no doctor but something isn’t right here .. why wouldn’t they help her? Finally I went to different doctor when she was 2 and with in 3 min she gave me a referral to a genetics specialist and I already felt better , by the time we got seen and test back carter was 3, I was in complete shock when I got the news January 16,2019. I thought she was going to maybe have a muscle disorder or something , when I was told
MS 11-111 I thought the world was ending , this can’t be true .. they even made me feel like I wouldn’t have long with her.. it’s been almost a year now and she is doing wonderful . Doctors even are amazed at her health .. she has not been sick and still growing and still learning . Her only concerns at this moment is physical. She has a very severe case of scoliosis, her neck is pretty bad and her hips , knees and hands . The want to do a double hip replacement and possible disc in neck but we (I) am at a stand still right now. Praying for the right decision.


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