in the newpaper

[Guest guest]

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.