Guest guest Posted December 20, 2000 Report Share Posted December 20, 2000 Hi Everyone, I have been reading posts on this egroup for several months now and this is the first time I have posted. I have been moved by the personal stories and fascinated by all of the information you have to share. My husband and I have had 3 children, 2 of our children have been diagnosed with Leigh's Disease. I will not get into a lot of detail, however, I do need to share some information. Our youngest daughter, Stefany, was diagnosed when she was 5, she was developmentally delayed but really had no other symptoms until she was 6. In June of 1995 the disease hit her head on and on March 28, 1996 at the age of 7, our little angel went back to heaven to be with her God. Our oldest daughter, e, is 17 and is our only child that has so far been unaffected. is our oldest child and is 18. He was diagnosed with Leigh's at the age of 9. He amazes us every day he is with us. In July of 1997 Leigh's started affecting his respiratory system and he is now on a ventilator 24 hours a day to help him breathe. Along with that he is fed through a G-Tube is non-ambulatory etc. He is a wonderful boy and has a smile that makes you just melt. We have been fortunate to have a nursing agency that provides nurses on some days up to 17 hours a day and other days 9 hours. They have cared for both of our children. I know many of you do not have this help and are taking care of your children on your own. I deeply admire all of you, the care of our sick children is not easy and it takes its toll on all of us. Our family has had some very emotional situations to deal with over the years, as I know most of you have also and I would like to share a prayer from a book I received from my minister when I was recently at a very low point in my life. Here it is and I hope that it may in some way help all of us to help our children: Jesus, you cared for all the sick who came to you. I want to care with loving compassion, to attend to details with gentleness. But I become weary and impatient, angry and abrupt. It is hard to watch the suffering of someone I love, hard to find energy for all I must do. I grow discouraged and resentful. Let me learn from your life of compassion. Spirit of healing and comfort, be with me in these difficult times. Teach me to take time for myself, to be gentle with my own limits, to ask for help from others. May your grace allow me to forgive myself when I fail, to let go of my expectations, to grieve all my losses. Send your healing power to me and the one for whom I care. We trust in your love. ---Kathleen Fischer Thank you all for listening! Barb & Bret Hagdahl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2000 Report Share Posted December 21, 2000 beautiful prayer! Re: Re: Sorry! > Hi Everyone, > I have been reading posts on this egroup for several months now and this is > the first time I have posted. I have been moved by the personal stories and > fascinated by all of the information you have to share. > > My husband and I have had 3 children, 2 of our children have been diagnosed > with Leigh's Disease. I will not get into a lot of detail, however, I do > need to share some information. Our youngest daughter, Stefany, was > diagnosed when she was 5, she was developmentally delayed but really had no > other symptoms until she was 6. In June of 1995 the disease hit her head on > and on March 28, 1996 at the age of 7, our little angel went back to heaven > to be with her God. > > Our oldest daughter, e, is 17 and is our only child that has so far > been unaffected. > > is our oldest child and is 18. He was diagnosed with Leigh's at the > age of 9. He amazes us every day he is with us. In July of 1997 Leigh's > started affecting his respiratory system and he is now on a ventilator 24 > hours a day to help him breathe. Along with that he is fed through a G-Tube > is non-ambulatory etc. He is a wonderful boy and has a smile that makes you > just melt. > > We have been fortunate to have a nursing agency that provides nurses on some > days up to 17 hours a day and other days 9 hours. They have cared for both of > our children. I know many of you do not have this help and are taking care > of your children on your own. I deeply admire all of you, the care of our > sick children is not easy and it takes its toll on all of us. > > Our family has had some very emotional situations to deal with over the > years, as I know most of you have also and I would like to share a prayer > from a book I received from my minister when I was recently at a very low > point in my life. Here it is and I hope that it may in some way help all of > us to help our children: > > Jesus, you cared for all the sick who came to you. I want to care with > loving compassion, to attend to details with gentleness. But I become weary > and impatient, angry and abrupt. It is hard to watch the suffering of > someone I love, hard to find energy for all I must do. I grow discouraged > and resentful. Let me learn from your life of compassion. > > Spirit of healing and comfort, be with me in these difficult times. Teach me > to take time for myself, to be gentle with my own limits, to ask for help > from others. May your grace allow me to forgive myself when I fail, to let > go of my expectations, to grieve all my losses. Send your healing power to > me and the one for whom I care. We trust in your love. > > ---Kathleen Fischer > > Thank you all for listening! > > Barb & Bret Hagdahl > > > > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2000 Report Share Posted December 21, 2000 Dear Kathleen: Thanks for the beautiful prayer. Yes, we all feel that ways some times. I feel like that especially when I see other children my daughter's age and see what they are doing. And when my boys are playing very readily with a 9 month old and their sister is laying on the carpet watching tv with a smile on her face. I am going to copy the prayer and keep it with me. Thank you to your minister for providing the prayer. It's neat when they can find just the right thing to give to you. mom to Leah 2 1/2 BHagdahl@... wrote: > Hi Everyone, > I have been reading posts on this egroup for several months now and this is > the first time I have posted. I have been moved by the personal stories and > fascinated by all of the information you have to share. > > My husband and I have had 3 children, 2 of our children have been diagnosed > with Leigh's Disease. I will not get into a lot of detail, however, I do > need to share some information. Our youngest daughter, Stefany, was > diagnosed when she was 5, she was developmentally delayed but really had no > other symptoms until she was 6. In June of 1995 the disease hit her head on > and on March 28, 1996 at the age of 7, our little angel went back to heaven > to be with her God. > > Our oldest daughter, e, is 17 and is our only child that has so far > been unaffected. > > is our oldest child and is 18. He was diagnosed with Leigh's at the > age of 9. He amazes us every day he is with us. In July of 1997 Leigh's > started affecting his respiratory system and he is now on a ventilator 24 > hours a day to help him breathe. Along with that he is fed through a G-Tube > is non-ambulatory etc. He is a wonderful boy and has a smile that makes you > just melt. > > We have been fortunate to have a nursing agency that provides nurses on some > days up to 17 hours a day and other days 9 hours. They have cared for both of > our children. I know many of you do not have this help and are taking care > of your children on your own. I deeply admire all of you, the care of our > sick children is not easy and it takes its toll on all of us. > > Our family has had some very emotional situations to deal with over the > years, as I know most of you have also and I would like to share a prayer > from a book I received from my minister when I was recently at a very low > point in my life. Here it is and I hope that it may in some way help all of > us to help our children: > > Jesus, you cared for all the sick who came to you. I want to care with > loving compassion, to attend to details with gentleness. But I become weary > and impatient, angry and abrupt. It is hard to watch the suffering of > someone I love, hard to find energy for all I must do. I grow discouraged > and resentful. Let me learn from your life of compassion. > > Spirit of healing and comfort, be with me in these difficult times. Teach me > to take time for myself, to be gentle with my own limits, to ask for help > from others. May your grace allow me to forgive myself when I fail, to let > go of my expectations, to grieve all my losses. Send your healing power to > me and the one for whom I care. We trust in your love. > > ---Kathleen Fischer > > Thank you all for listening! > > Barb & Bret Hagdahl > > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2000 Report Share Posted December 21, 2000 Barb, What an awesome prayer. Thanks so much. I really needed that right now as I'm sure others on this site did as well. God Bless you and your family (and your little angel too.) Jayne Nelsen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2000 Report Share Posted December 21, 2000 it is a beautiful prayer! Virginia Virginia M. Buchanan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2000 Report Share Posted December 21, 2000 You guys who have been on DCA or still are, would you mind sharing your experiences with it? Did it help? Hurt? Make no difference? What was/is the experience like to participate in a clinical trial? Thanks for your input. Virginia, Emma's Mom (Complex I, 16 months) Virginia M. Buchanan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2000 Report Share Posted December 21, 2000 I just got in the tapes from the 3/2000 UMDF conference; it was so interesting to hear the "TOP" people talk about the mitochondrial diseases. Since it is so difficult to actually attend these things with the cost, ability to have someone care for your child, etc., the tapes are a great substitute. They were $70 for 16 tapes - and these are the ones with the topics I chose. I would recommend them to others. Virginia Virginia M. Buchanan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2001 Report Share Posted October 29, 2001 Lori, Has happened to us many times. Can't be helped. We have an internet business and get them often. You just fix what you can and move on. Glad you got all fixed! Have a great week! Horsley Mom to 11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2001 Report Share Posted October 29, 2001 I should be virus free now. I am so sorry! Evidently, my computer became infected with a virus that goes into your email address and starts sending random messages to people. I bought Norton last night online and it should be okay now. Please forgive me . . . Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2001 Report Share Posted October 30, 2001 Hi Lori Hope my note of caution didn't come across cold to you. Wasn't intended. Glad your up and running fine now. Thanks Sorry! I should be virus free now. I am so sorry! Evidently, my computer became infected with a virus that goes into your email address and starts sending random messages to people. I bought Norton last night online and it should be okay now. Please forgive me . . . LoriPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2001 Report Share Posted October 30, 2001 Lori No forgivness needed. It could happen to any of us! Alison Sorry! I should be virus free now. I am so sorry! Evidently, my computer became infected with a virus that goes into your email address and starts sending random messages to people. I bought Norton last night online and it should be okay now. Please forgive me . . . LoriPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2001 Report Share Posted October 30, 2001 Hi Lori No harm done, we all just wanted to warn everyone, glad that you have got Norton, it detected the infected attachemnts coming in to me, so no worries. Hugs > Hi Lori > Hope my note of caution didn't come across cold to you. Wasn't intended. Glad your up and running fine now. > Thanks > > Sorry! > > > I should be virus free now. I am so sorry! Evidently, my computer became infected with a virus that goes into your email address and starts sending random messages to people. I bought Norton last night online and it should be okay now. Please forgive me . . . > Lori > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2001 Report Share Posted November 2, 2001 We all get so much crap e-mail, who can say where it came from. Don't sweat it. Jeff Quote Link to comment Share on other sites More sharing options...
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