tag:blogger.com,1999:blog-2967166299111634469.post1091540080835920750..comments2014-10-02T11:52:29.931-06:00Comments on Harper Leigh Johnson's Story: Holding my ownHarperhttp://www.blogger.com/profile/04269073799817094016noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-2967166299111634469.post-83229802426634039432013-02-10T10:15:52.223-07:002013-02-10T10:15:52.223-07:00Hi, my name is Jessica Muzzy, my son was diagnosed...Hi, my name is Jessica Muzzy, my son was diagnosed with the same seizure disorder as harper. He was first diagnosed with ohtahara syndrome also and just about three weeks ago we found out that he has this rare mutation, we have also started the potiga and he has been on it for a week now, he seems to be making some progress already. it would be really nice to chat with you, its really nice talking to people who actually understand what you're going through. Anonymoushttps://www.blogger.com/profile/01315221526697582875noreply@blogger.comtag:blogger.com,1999:blog-2967166299111634469.post-81206097013018145312012-11-06T20:53:33.672-07:002012-11-06T20:53:33.672-07:00Lisa so good to hear from you. Please email me at...Lisa so good to hear from you. Please email me at scottyandjim@yahooHarperhttps://www.blogger.com/profile/04269073799817094016noreply@blogger.comtag:blogger.com,1999:blog-2967166299111634469.post-83702329018339201332012-10-20T22:25:24.557-06:002012-10-20T22:25:24.557-06:00Would love to know more about the new medication.....Would love to know more about the new medication...our son has the same neuro genetic condition and seems to be following Harper's progress...we are so grateful for that. He is only 8 months so his doc is really relectant to start the medication...thanks.Anonymoushttps://www.blogger.com/profile/17250779048861403008noreply@blogger.comtag:blogger.com,1999:blog-2967166299111634469.post-23390848914805455712012-10-11T12:39:02.774-06:002012-10-11T12:39:02.774-06:00always happy to catch up on Harpers progress. xoxo...always happy to catch up on Harpers progress. xoxo<br />Anonymoushttps://www.blogger.com/profile/02076818514993853131noreply@blogger.comtag:blogger.com,1999:blog-2967166299111634469.post-33604649141017819732012-10-11T12:36:20.852-06:002012-10-11T12:36:20.852-06:00the video was private--but photo was precious---em...the video was private--but photo was precious---emilyAnonymoushttps://www.blogger.com/profile/02076818514993853131noreply@blogger.com