Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 Welcome to our group. This is a great group to be in if you have to deal with this awful disease. Basically the group works by just sharing about your family and affected child/children (or self) and asking any questions you may have. After being here a while you will start recognizing some of our names and get used to how it works. I know face to face support groups are probably great, but this group often feels like it is face to face. People are very eager to help one another and the love between members is often very apparent. I hope you will feel at home with us too. Please tell us about Jack. Also if you haven't been there yet, check out UMDF.org to learn tons. Another great way to learn is to read peoples' own web pages like that I list just above my name below. See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) I'm new.... > > > > Hi- > I'm here because my son Jack was recently diagonosed with > mitochondrial disease. We are fortunate to live in the Boston area > and have Dr. Mark Korson following his case. We went down to Atlanta > to see Dr. Shoffner in May and received the diagnosis in August. > Jack will be three in January. I guess my question would be how does > this work??? Probably a silly question. I have been looking for > others to talk to. I went to a support group recently, but the > closest one is over an hour away. I would love any information or > support. I am trying to come up with different ways of fundraising > for mitochodrial research and/or families affected by it. I am a stay > at home mom, and Jack is currently stable, so I want to do what I can > to help advocate for him. Thanks.... > > > > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
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