Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 that was beautiful Debra, thank you! Smiles, Mattie and the future > I have only been on this group for a few months, it was Alice's suggestion that I read here because she is certain I have mito...we connected through my ci and deafness. I have never lurked on a more caring, genuine board. Everyone here is family, I have no idea how long this has existed but it seems like births and deaths are a family thing and each of you is just emailing, instead of grabbing the phone. There are celebrations of victories, and common goals of sharing the important information mito warrants that are profound but, the sharing of the everyday challenges, the long almost endless wait for diagnoses, and the down times are what makes everyone feel so at ease and comfortable. > > I found out about Mattie Stepanik while watching Oprah a year or more ago. He was asking that everyone concentrate healing thoughts about a sore on his head that might need a skin graft if it didn't heal soon and surgery for the graft was too risky. I thought he had MD and felt pain that he and his Mom battled this alone but together after her losing three other children and knowing his time was limited. It was not until yesterday that I read he had mito. I know each of you feels as if a relative has passed. He gave this awful disease visibility and prayerfully, I hope his death will bring it more awareness also. > > I am sorry your most visible spokesperson is gone but his legacy of looking to the future while celebrating today is alive and flourishing on . Tonight I pray each of you realizes your special place in this world also. > > Debra > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 I have only been on this group for a few months, it was Alice's suggestion that I read here because she is certain I have mito...we connected through my ci and deafness. I have never lurked on a more caring, genuine board. Everyone here is family, I have no idea how long this has existed but it seems like births and deaths are a family thing and each of you is just emailing, instead of grabbing the phone. There are celebrations of victories, and common goals of sharing the important information mito warrants that are profound but, the sharing of the everyday challenges, the long almost endless wait for diagnoses, and the down times are what makes everyone feel so at ease and comfortable. I found out about Mattie Stepanik while watching Oprah a year or more ago. He was asking that everyone concentrate healing thoughts about a sore on his head that might need a skin graft if it didn't heal soon and surgery for the graft was too risky. I thought he had MD and felt pain that he and his Mom battled this alone but together after her losing three other children and knowing his time was limited. It was not until yesterday that I read he had mito. I know each of you feels as if a relative has passed. He gave this awful disease visibility and prayerfully, I hope his death will bring it more awareness also. I am sorry your most visible spokesperson is gone but his legacy of looking to the future while celebrating today is alive and flourishing on . Tonight I pray each of you realizes your special place in this world also. Debra Quote Link to comment Share on other sites More sharing options...
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