Guest guest Posted March 25, 2005 Report Share Posted March 25, 2005 That is a very nice article. Thanks for sharing it. laurie > > > This was in last weeks newspaper. The reporter did an article about > the need for feeding tubes. Of course, it coincides with all the > media attention on the Terri Shiavo case. It does mention Mito, so I > thought you might be interested in reading the story: I have copied > and pasted it below, so you wouldn't have to link over to the > paper's website. Happy Holidays ! > > > Special 'drink' keeps 6-year-old active, alive > > BY JOHN A. TORRES > FLORIDA TODAY WEB EXTRAS > RELATED STORIES: > State backs off Schiavo battle > > > > VIERA - Golden runs through the halls of his Viera home > playing with his toys like any other 6-year-old. > > His room appears to have been yanked straight out of a Nickelodeon > cartoon. Reminders of his favorite shows are all around: Little Bear, > Bob the Builder, Blue's Clues and The Fairly OddParents. > > But one thing stands out near the foot of his bed. There are cases of > Peptamen -- the nutritional drink that gets pumped into 's > stomach five times a day. > > Without it he would die. > > The ever-smiling boy has been fed that way since he was a 6-pound, 8- > month-old baby. > > Weighing only 2 pounds at birth, was diagnosed with > mitochondrial myopathy. > > The disease affects many things, including his ability to gain weight. > > He also has difficulty differentiating between swallowing and > breathing. > > " Without a feeding tube, we wouldn't have a , " said his mother, > Golden, as walked to his bedroom to look through the > pages of a " Little Bear " book. " He wouldn't exist. " > > Although has seen therapists for years who have tried to get > him to increase his oral food intake, not much progress has been made > above a few french fries or noodles that he can digest. > > " It would never be enough to sustain him, " she said. " He will have to > be fed like this forever. " > > , who attends kindergarten at Quest Elementary School, also > receives all of his medications through the feeding tube. > > A nurse at the school gives a feeding at lunch. > > Unlike the Schiavo case, removing 's feeding tube would be > considered child abuse. And, his family said, it would never be an > option for them. > > " He has to have the feeding tube, " his mother said, rubbing her son's > hair. " For his particular case it's life-sustaining. " > > As she spoke, suddenly jumped off the couch and ran to his > room. Finding his favorite book, he called out to his mother. > > " Read to me, Mommy, " he asked, curling up on his bed with a " Little > Bear " book. > > > > > > > > > > > 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 March 25, 2005 Report Share Posted March 25, 2005 , This is so inspiring! This should be in a national paper though! Lois > [Original Message] > > To: > > Date: 3/25/2005 11:39:12 AM > Subject: in the newpaper > > > > This was in last weeks newspaper. The reporter did an article about > the need for feeding tubes. Of course, it coincides with all the > media attention on the Terri Shiavo case. It does mention Mito, so I > thought you might be interested in reading the story: I have copied > and pasted it below, so you wouldn't have to link over to the > paper's website. Happy Holidays ! > > > Special 'drink' keeps 6-year-old active, alive > > BY JOHN A. TORRES > FLORIDA TODAY WEB EXTRAS > RELATED STORIES: > State backs off Schiavo battle > > > > VIERA - Golden runs through the halls of his Viera home > playing with his toys like any other 6-year-old. > > His room appears to have been yanked straight out of a Nickelodeon > cartoon. Reminders of his favorite shows are all around: Little Bear, > Bob the Builder, Blue's Clues and The Fairly OddParents. > > But one thing stands out near the foot of his bed. There are cases of > Peptamen -- the nutritional drink that gets pumped into 's > stomach five times a day. > > Without it he would die. > > The ever-smiling boy has been fed that way since he was a 6-pound, 8- > month-old baby. > > Weighing only 2 pounds at birth, was diagnosed with > mitochondrial myopathy. > > The disease affects many things, including his ability to gain weight. > > He also has difficulty differentiating between swallowing and > breathing. > > " Without a feeding tube, we wouldn't have a , " said his mother, > Golden, as walked to his bedroom to look through the > pages of a " Little Bear " book. " He wouldn't exist. " > > Although has seen therapists for years who have tried to get > him to increase his oral food intake, not much progress has been made > above a few french fries or noodles that he can digest. > > " It would never be enough to sustain him, " she said. " He will have to > be fed like this forever. " > > , who attends kindergarten at Quest Elementary School, also > receives all of his medications through the feeding tube. > > A nurse at the school gives a feeding at lunch. > > Unlike the Schiavo case, removing 's feeding tube would be > considered child abuse. And, his family said, it would never be an > option for them. > > " He has to have the feeding tube, " his mother said, rubbing her son's > hair. " For his particular case it's life-sustaining. " > > As she spoke, suddenly jumped off the couch and ran to his > room. Finding his favorite book, he called out to his mother. > > " Read to me, Mommy, " he asked, curling up on his bed with a " Little > Bear " book. > > > > > > > > > > > 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...
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