Guest guest Posted January 19, 1996 Report Share Posted January 19, 1996 Suhad - That was beautiful and very well written. . RE: my daughter has mito Dear , I am so sorry for what you are going through, and yet if it is mito, I amglad you are getting off to an early start with a diagnosis. We searched fora diagnosis for our daughter for 8 and a half years and only got one a weekbefore her death. Then, our 5 year old at the time got the same diagnosis.There are so many form and presentations and severities of this disease andeven when you get a pinpoint of exact mutation, you still have so little asfar as predictability. Mito is so darn complicated, the more I read, themore I get confused.The more I learn, the more questions I have that cannotbe answered. I want to welcome you to out group. All the things I did aftermy daughter's death, I would say the most helpful was joining this group. Itseems that the best answers come from parents with experience rather thanour doctors. People on this group understand and truly want to help you withall of their heart. No question is ever stupid and boy will you get answersand feedback! It is like we have our own mito family. I pray for good luckfor you that you will get one of the better diagnosis of mito. There are somany websites for our children filled wit information. My daughter's iswww.samya.org God bless,Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leannawith same disease.Samya's Memorial Site: www.Samya.orgEmail: Suhad1970@...Alt Email: Suhad@...AiM Chat: Suhad1970-----Original Message-----From: burpcloth Sent: Sunday, August 29, 2004 4:10 PMTo: Mito Subject: my daughter has mitohi my name is kelly, my daughter is 3 months old and has been diagnosed with mitochondria disorder. we still arent sure exactly which one. she is still in the hospital and will be there for a while longer untill we get a g-tube put in. my son who is 2 may have it as well but we are still waiting for results from the blood tests. he has not had a biopsy done yet. i have been going crazy trying to find any info i can i feel like i have read everything at least twice. im not really sure what im looking for but if anybody wants to share their experiences i would be intertested. its good to know that there are other people who know what we are going through. the doctors say that this is so rare that they dont know alot about it. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2004 Report Share Posted August 29, 2004 hi my name is kelly, my daughter is 3 months old and has been diagnosed with mitochondria disorder. we still arent sure exactly which one. she is still in the hospital and will be there for a while longer untill we get a g-tube put in. my son who is 2 may have it as well but we are still waiting for results from the blood tests. he has not had a biopsy done yet. i have been going crazy trying to find any info i can i feel like i have read everything at least twice. im not really sure what im looking for but if anybody wants to share their experiences i would be intertested. its good to know that there are other people who know what we are going through. the doctors say that this is so rare that they dont know alot about it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Welcome to the group. It is a wonderful group of people who have quite a bit of knowledge. You might want to tell us a little bit about your daughter and if someone has a similiar situation they can respond. Otherwise post a specific question and someone is bound to answer. Geri-Anne and Wyatt, Complex I > hi my name is kelly, my daughter is 3 months old and has been > diagnosed with mitochondria disorder. we still arent sure exactly > which one. she is still in the hospital and will be there for a > while longer untill we get a g-tube put in. my son who is 2 may > have it as well but we are still waiting for results from the blood > tests. he has not had a biopsy done yet. i have been going crazy > trying to find any info i can i feel like i have read everything at > least twice. im not really sure what im looking for but if anybody > wants to share their experiences i would be intertested. its good > to know that there are other people who know what we are going > through. the doctors say that this is so rare that they dont know > alot about it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Dear , I am so sorry for what you are going through, and yet if it is mito, I am glad you are getting off to an early start with a diagnosis. We searched for a diagnosis for our daughter for 8 and a half years and only got one a week before her death. Then, our 5 year old at the time got the same diagnosis. There are so many form and presentations and severities of this disease and even when you get a pinpoint of exact mutation, you still have so little as far as predictability. Mito is so darn complicated, the more I read, the more I get confused.The more I learn, the more questions I have that cannot be answered. I want to welcome you to out group. All the things I did after my daughter's death, I would say the most helpful was joining this group. It seems that the best answers come from parents with experience rather than our doctors. People on this group understand and truly want to help you with all of their heart. No question is ever stupid and boy will you get answers and feedback! It is like we have our own mito family. I pray for good luck for you that you will get one of the better diagnosis of mito. There are so many websites for our children filled wit information. My daughter's is www.samya.org God bless, Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.Samya.org Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 my daughter has mito hi my name is kelly, my daughter is 3 months old and has been diagnosed with mitochondria disorder. we still arent sure exactly which one. she is still in the hospital and will be there for a while longer untill we get a g-tube put in. my son who is 2 may have it as well but we are still waiting for results from the blood tests. he has not had a biopsy done yet. i have been going crazy trying to find any info i can i feel like i have read everything at least twice. im not really sure what im looking for but if anybody wants to share their experiences i would be intertested. its good to know that there are other people who know what we are going through. the doctors say that this is so rare that they dont know alot about it. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Welcome to the group. You will find many caring and supportive people here. It is always nice to find a place where you know someone can relate to you. I am the mother of 4 children (the 5th is due this month). Only our youngest daughter is affected, and we are praying the baby will be fine too. Grace is 2 years old and she also has a non specific form of Mitochondrial Disease. She became ill at about 3 weeks of age and was not diagnosed until she was 1 year old. Grace is doing remarkably well, but has many secondary problems due to the mito. Fortunately for her the cocktail has worked well, and we see good results. This is a very frustrating disease, since we defiantly see ups and downs with her health. We have definitely made modifications in our daily life to cope with her issues. I had once dreamed that I would love to be a stay at home Mom. I never expected that once I was finally able to be home, my days would be filled of doctor appointments, early intervention groups, speech and occupational therapy. With all that said, it is worth every trip to see her smile and progress despite this horrific disease. Best wishes with your baby. I hope she is able to come home from the hospital really soon. (I bet you can't wait.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Where are you from ? I live in Des Moines, Iowa. I am glad you found this group as it has been the best group I have ever been in. I tried a couple others and none felt quite as " homey " as this one. There is always someone who will know the perfect answer to a question you have, and everyone is so friendly. It is hard to have a diagnosis like this for our kids and to live with the daily basis of caring for our kids and watching them struggle, but this group is a wonderful support through it all. Welcome, and feel free to ask any questions you may have. Tell us more about your family if you can. Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy,SID, dev. delays, asthma, chronic vomiting... Zipporrah (10 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach issues, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (7), Kezia (3), & Marquis (2) (some with Mito symptoms) my daughter has mito > hi my name is kelly, my daughter is 3 months old and has been > diagnosed with mitochondria disorder. we still arent sure exactly > which one. she is still in the hospital and will be there for a > while longer untill we get a g-tube put in. my son who is 2 may > have it as well but we are still waiting for results from the blood > tests. he has not had a biopsy done yet. i have been going crazy > trying to find any info i can i feel like i have read everything at > least twice. im not really sure what im looking for but if anybody > wants to share their experiences i would be intertested. its good > to know that there are other people who know what we are going > through. the doctors say that this is so rare that they dont know > alot about it. > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Go to the umdf.org website and learn tons and also there are many of us that have caringbridge web pages with our personal stories. Ours is at www.caringbridge.org/ia/mitomomof9 (It has our journey towards the Mito diagnosis and photos of some of our kids) Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy,SID, dev. delays, asthma, chronic vomiting... Zipporrah (10 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach issues, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (7), Kezia (3), & Marquis (2) (some with Mito symptoms) my daughter has mito > hi my name is kelly, my daughter is 3 months old and has been > diagnosed with mitochondria disorder. we still arent sure exactly > which one. she is still in the hospital and will be there for a > while longer untill we get a g-tube put in. my son who is 2 may > have it as well but we are still waiting for results from the blood > tests. he has not had a biopsy done yet. i have been going crazy > trying to find any info i can i feel like i have read everything at > least twice. im not really sure what im looking for but if anybody > wants to share their experiences i would be intertested. its good > to know that there are other people who know what we are going > through. the doctors say that this is so rare that they dont know > alot about it. > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Hi~ I'm new here. I just got papers in the mail today from Dr. Shoffner, my daughter has a complex I defect. Can someone tell me anything???? What does that mean??? Thanks, Tammy Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.