Hi everyone. My name is Lori Dunham and our fourteen year old daughter Grace was diagnosed with LEMS August of this year. We currently live in Florida. Last March our daughter was playing basketball and by May she could hardly walk, lost over 12 pounds, slurred speech, gagging issues, etc. Once she was diagnosed correctly, we have seen great improvement with her first with mestinon and ruzurgi but IVIG has made a life changing difference for her. I would love to connect with other parents of children with LEMS. I understand how overwhelming it is. I finally feel like we are coming out of a fog and she her personality coming back to life!!
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