Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Thank you everyone for your support of me and my family. I am sorry to say that my grand daughter Elaine Ruth passed away last week on April 19th. Just one day short of her 3rd birthday. (You can check out her website at elaineandrew.com) She had many challenges in her short life. She was born with major heart defects. Last month her heart started failing. She had surgery last year that was supposed to keep her alive into her teens. The doctors have not been able to figure out why she developed cardiomyopathy so quickly. They did an autopsey. Hopefully it will give us some answers. I did mention to them that I suspect that I have a mito disease. As I told you before. I started adding MCT's (medium chain triglycerides) to my diet. It helped me feel well enough to help out at this difficult time. We took our fifth-wheel trailer to the hospital. They had a few RV spots there in the parking lot. I stayed in the trailer and tended my other grand daughter who is one. I was also able to give my daughter a rest at times as she sat with Elaine. Elaine was on the list for a heart transplant. However one did not come in time. She developed a yeast infection, and her organs started shutting down. She fought a brave fight. We were there at the hospital for 5 weeks. I should be in a crash, but I am doing OK-health wise anyway. Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Joanne, I'm so sorry to read about the loss of your sweet granddaughter, Elaine. How difficult it must be to deal with this. Please know that my thoughts and prayers go out to you and your family at this time. I'm glad you were able to be there for her as needed. The website is beautiful. Please accept my sincere condolences. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Dear Joanne, Sincere condolences upon the lost of your grand- daughter. I cannot imagine the suffering of your family over such a tragic loss. I am sure that you now have a little angel in heaven. You are remembered in thoughts and prayers. Sincerely, Pennsylvania Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Joanne I am saddened by the loss of your granddaughter Elaine. The family is in my thoughts and prayers as you process all that has happened and deal with it. laurie > > Reply-To: > Date: Wed, 28 Apr 2004 18:06:26 -0000 > To: > Subject: Prayers for Elaine > > Thank you everyone for your support of me and my family. I am sorry > to say that my grand daughter Elaine Ruth passed away last > week on April 19th. Just one day short of her 3rd birthday. (You > can check out her website at elaineandrew.com) She had many > challenges in her short life. She was born with major heart > defects. Last month her heart started failing. She had surgery > last year that was supposed to keep her alive into her teens. > The doctors have not been able to figure out why she developed > cardiomyopathy so quickly. They did an autopsey. Hopefully it will > give us some answers. I did mention to them that I suspect that I > have a mito disease. As I told you before. I started adding MCT's > (medium chain triglycerides) to my diet. It helped me feel well > enough to help out at this difficult time. We took our fifth-wheel > trailer to the hospital. They had a few RV spots there in the > parking lot. I stayed in the trailer and tended my other grand > daughter who is one. I was also able to give my daughter a rest at > times as she sat with Elaine. Elaine was on the list for a heart > transplant. However one did not come in time. She developed a > yeast infection, and her organs started shutting down. She fought a > brave fight. We were there at the hospital for 5 weeks. I should be > in a crash, but I am doing OK-health wise anyway. > Joanne > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 I am so sorry for the loss of your granddaughter Elaine. I can't imagine how hard this is for all of you. You are in my thoughts and prayers. a On Wed, 28 Apr 2004 18:06:26 -0000 " bionicgirl_bionic " pjcrook@...> writes: Thank you everyone for your support of me and my family. I am sorry to say that my grand daughter Elaine Ruth passed away last week on April 19th. Just one day short of her 3rd birthday. (You can check out her website at elaineandrew.com) She had many challenges in her short life. She was born with major heart defects. Last month her heart started failing. She had surgery last year that was supposed to keep her alive into her teens. The doctors have not been able to figure out why she developed cardiomyopathy so quickly. They did an autopsey. Hopefully it will give us some answers. I did mention to them that I suspect that I have a mito disease. As I told you before. I started adding MCT's (medium chain triglycerides) to my diet. It helped me feel well enough to help out at this difficult time. We took our fifth-wheel trailer to the hospital. They had a few RV spots there in the parking lot. I stayed in the trailer and tended my other grand daughter who is one. I was also able to give my daughter a rest at times as she sat with Elaine. Elaine was on the list for a heart transplant. However one did not come in time. She developed a yeast infection, and her organs started shutting down. She fought a brave fight. We were there at the hospital for 5 weeks. I should be in a crash, but I am doing OK-health wise anyway. Joanne Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Joanne, I'm deeply saddened to hear of your loss. I'm sure there are no words that can heal your pain right now, but I hope it helps to know that your family is in our thoughts and prayers. hugs, Maggie > Thank you everyone for your support of me and my family. I am sorry > to say that my grand daughter Elaine Ruth passed away last > week on April 19th. Just one day short of her 3rd birthday. (You > can check out her website at elaineandrew.com) She had many > challenges in her short life. She was born with major heart > defects. Last month her heart started failing. She had surgery > last year that was supposed to keep her alive into her teens. > The doctors have not been able to figure out why she developed > cardiomyopathy so quickly. They did an autopsey. Hopefully it will > give us some answers. I did mention to them that I suspect that I > have a mito disease. As I told you before. I started adding MCT's > (medium chain triglycerides) to my diet. It helped me feel well > enough to help out at this difficult time. We took our fifth- wheel > trailer to the hospital. They had a few RV spots there in the > parking lot. I stayed in the trailer and tended my other grand > daughter who is one. I was also able to give my daughter a rest at > times as she sat with Elaine. Elaine was on the list for a heart > transplant. However one did not come in time. She developed a > yeast infection, and her organs started shutting down. She fought a > brave fight. We were there at the hospital for 5 weeks. I should be > in a crash, but I am doing OK-health wise anyway. > Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2004 Report Share Posted April 29, 2004 Joanne, When I read about Elaine my heart just ached. The love a grandmother has is like no other, as the pain a grandmother feels when she looses one of her precious grandchildren must be almost unbearable. Please know that my prayers are with you and your family at this most difficult time. I can not seem to find the right words to tell you how badly I feel for you. Just now I care. Kathy, grandma to Audrey, 32 mos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2004 Report Share Posted April 29, 2004 Our thoughts are with you through this difficult time. I have a 3 year old who will be evaluated for mito in June. I hope you can find out more of what is going on to make sure all of you affected get the best help possible, sounds like the MCT's are helping you... Take care, RH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2004 Report Share Posted April 29, 2004 Our thoughts and prayers are with you and your family. That you may find support and comfort you need during the grief. AnnMarie- Complex IV Married to my best friend Rick, mom of (14), (11), Cassandra(6) and Joe(4) - complex IV, lactic acidosis, CP, tethered chord syndrome, dysautonomia, and a smile that never quits :-) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2004 Report Share Posted April 29, 2004 Joanne, I am so so very sorry to hear about your grand daughter. Please know that I will keep you and your family in my thoughts and prayers. Hugs, bionicgirl_bionic wrote: >Thank you everyone for your support of me and my family. I am sorry >to say that my grand daughter Elaine Ruth passed away last >week on April 19th. Just one day short of her 3rd birthday. (You >can check out her website at elaineandrew.com) She had many >challenges in her short life. She was born with major heart >defects. Last month her heart started failing. She had surgery >last year that was supposed to keep her alive into her teens. >The doctors have not been able to figure out why she developed >cardiomyopathy so quickly. They did an autopsey. Hopefully it will >give us some answers. I did mention to them that I suspect that I >have a mito disease. As I told you before. I started adding MCT's >(medium chain triglycerides) to my diet. It helped me feel well >enough to help out at this difficult time. We took our fifth-wheel >trailer to the hospital. They had a few RV spots there in the >parking lot. I stayed in the trailer and tended my other grand >daughter who is one. I was also able to give my daughter a rest at >times as she sat with Elaine. Elaine was on the list for a heart >transplant. However one did not come in time. She developed a >yeast infection, and her organs started shutting down. She fought a >brave fight. We were there at the hospital for 5 weeks. I should be >in a crash, but I am doing OK-health wise anyway. >Joanne > > > > >Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > >Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2004 Report Share Posted May 1, 2004 What a terrible loss it is when someone so young passes. I can't even begin to imagine how it feels. My thoughts and prayers are with you and your family at this time. Sheila Quote Link to comment Share on other sites More sharing options...
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