Guest guest Posted September 30, 2004 Report Share Posted September 30, 2004 Hello All, I am new to these groups. I have a son 20months diagnosed with Leigh's. I came here because of my son's caring bridge site. Vicki signed my Elijah's guestbook and I thought I would come and see what it was all about. She mistakingly thought I was the Anne that posts here. I hope to find a few friends now that I am here. I am still navigation how to get the most out of the boards. Oh for those who have never heard of it Leighs disease is a nerometobolic disease. My little Eli has damage to a large portion of his brain. Children with Leigh's normally live only 2years or so after onset. God bless Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2004 Report Share Posted October 1, 2004 Hi Ann! I'm glad you found the group. I mostly lurk, but they people here are very supportive and kind and have a wealth of knowledge. I have read a lot about Leigh's on here. Welcome! I hope you find many friends here. Vicki ~ mom to Caden (almost 12 mo) possible mito Leigh's Disease Hello All,I am new to these groups. I have a son 20months diagnosed with Leigh's. I came here because of my son's caring bridge site. Vicki signed my Elijah's guestbook and I thought I would come and see what it was all about. She mistakingly thought I was the Anne that posts here. I hope to find a few friends now that I am here. I am still navigation how to get the most out of the boards. Oh for those who have never heard of it Leighs disease is a nerometobolic disease. My little Eli has damage to a large portion of his brain. Children with Leigh's normally live only 2years or so after onset. God blessAnnPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2004 Report Share Posted October 1, 2004 hi ann and welcome. my daughter, dx with leighs also, is now turning 5 on the 20th! please feel free to write me directly if you wish. bethany mom to brennan 7, palmer & anna grace (leighs) 4.5 > Hello All, > > I am new to these groups. I have a son 20months diagnosed with > Leigh's. I came here because of my son's caring bridge site. Vicki > signed my Elijah's guestbook and I thought I would come and see what > it was all about. She mistakingly thought I was the Anne that posts > here. I hope to find a few friends now that I am here. I am still > navigation how to get the most out of the boards. > > Oh for those who have never heard of it Leighs disease is a > nerometobolic disease. My little Eli has damage to a large portion > of his brain. Children with Leigh's normally live only 2years or so > after onset. > > God bless > > Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2004 Report Share Posted October 1, 2004 Hi Anne! My son is the same age as yours (well 21 months.... close enough!) While he doesnt have Leighs disease, he has been tentatively diagnosed with a mitochondrial disorder that is affecting his brain. Feel free to email me whenever you want! kschellenberg@... Keely > Hello All, > > I am new to these groups. I have a son 20months diagnosed with > Leigh's. I came here because of my son's caring bridge site. Vicki > signed my Elijah's guestbook and I thought I would come and see what > it was all about. She mistakingly thought I was the Anne that posts > here. I hope to find a few friends now that I am here. I am still > navigation how to get the most out of the boards. > > Oh for those who have never heard of it Leighs disease is a > nerometobolic disease. My little Eli has damage to a large portion > of his brain. Children with Leigh's normally live only 2years or so > after onset. > > God bless > > Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 hello my name is shannon i lost my little girl from leighs disease in may of 2003 i am sorry to hear about your child having this terrialble disease ... it is a long and hard road i know i have been down it ..brandy was six months and eight days when i lost her so i feel you on that ... i would love to see your childs website if you could send it to me please..and if you have any ? you would like to ask me just email me .. your friend shannon Quote Link to comment Share on other sites More sharing options...
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