Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 , Sorry to hera of the possible diagnosis, but then again it's great to hear that your girl will have her Sweet 16 this month. That's great news and an inspiration all the way around. Let us know what you find about this condition. I've never heard of it either. ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 , Sorry to hera of the possible diagnosis, but then again it's great to hear that your girl will have her Sweet 16 this month. That's great news and an inspiration all the way around. Let us know what you find about this condition. I've never heard of it either. ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 Sorry to hear her potential diagnosis. Don't worry about " not fitting in. " You have been a part of the group and we welcome you here. Happy 16 to your daughter. My oldest son, Luke, is 16 as well. They grow up way too fast, don't they! 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) concering brigitte well im not sure where to startt. we went to the dr fri and some research test has came back pointing our dx to zellweger syndrome. he said most people with this die by the age of two. so we are very blessed as we will be celebrating brigittes sweet 16 on the 22 of this month.the way i understand it this is a peroxisome diease.now i need to learn all over. any way im not sure if this is the group i need to belong to but i dont know where to turn for a support group. i know i dont post often but its nice knowing someone is there if i have guestions so now i dont know. hope someone can help thanks karen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 Sorry to hear her potential diagnosis. Don't worry about " not fitting in. " You have been a part of the group and we welcome you here. Happy 16 to your daughter. My oldest son, Luke, is 16 as well. They grow up way too fast, don't they! 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) concering brigitte well im not sure where to startt. we went to the dr fri and some research test has came back pointing our dx to zellweger syndrome. he said most people with this die by the age of two. so we are very blessed as we will be celebrating brigittes sweet 16 on the 22 of this month.the way i understand it this is a peroxisome diease.now i need to learn all over. any way im not sure if this is the group i need to belong to but i dont know where to turn for a support group. i know i dont post often but its nice knowing someone is there if i have guestions so now i dont know. hope someone can help thanks karen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 , Boy, do I know how you feel! After living with a mito dx for 5 yrs, my daughter was found to have the gene mutation for Rett Syndrome this summer thru a 2nd opinion. I have recently found out that she may yet have 2ndary mito issues, but that remains to be seen. I would encourage you to stay a part of the list, if you are still looking for support. I have found that I cannot bring myself to leave. I have been a member of this list for over 4 yrs and it is like family here, we even fight like family =) I hope you find some good info and support systems for Brigitte's condition. It does help you to cope better when you can talk with others witht he same issues. Happy sweet 16, Brigitte!! Krisitne, CHelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 , Boy, do I know how you feel! After living with a mito dx for 5 yrs, my daughter was found to have the gene mutation for Rett Syndrome this summer thru a 2nd opinion. I have recently found out that she may yet have 2ndary mito issues, but that remains to be seen. I would encourage you to stay a part of the list, if you are still looking for support. I have found that I cannot bring myself to leave. I have been a member of this list for over 4 yrs and it is like family here, we even fight like family =) I hope you find some good info and support systems for Brigitte's condition. It does help you to cope better when you can talk with others witht he same issues. Happy sweet 16, Brigitte!! Krisitne, CHelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 I’m sorry about the change in diagnoses. Please keep in touch. Sue Ann Bube concering brigitte well im not sure where to startt. we went to the dr fri and some research test has came back pointing our dx to zellweger syndrome. he said most people with this die by the age of two. so we are very blessed as we will be celebrating brigittes sweet 16 on the 22 of this month.the way i understand it this is a peroxisome diease.now i need to learn all over. any way im not sure if this is the group i need to belong to but i dont know where to turn for a support group. i know i dont post often but its nice knowing someone is there if i have guestions so now i dont know. hope someone can help thanks karen Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 I’m sorry about the change in diagnoses. Please keep in touch. Sue Ann Bube concering brigitte well im not sure where to startt. we went to the dr fri and some research test has came back pointing our dx to zellweger syndrome. he said most people with this die by the age of two. so we are very blessed as we will be celebrating brigittes sweet 16 on the 22 of this month.the way i understand it this is a peroxisome diease.now i need to learn all over. any way im not sure if this is the group i need to belong to but i dont know where to turn for a support group. i know i dont post often but its nice knowing someone is there if i have guestions so now i dont know. hope someone can help thanks karen Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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