Three-year-old Noah Estes has a form of Mito, which means that every cell in his body is mutated. It takes about $1,000 a day to keep this little one alive.
I've been following the Estes family blog for about a year now and Noah has been steadily getting worse (in fact, the Make a Wish Foundation sent the Estes family on a rush trip a few weeks ago). In the words of his mother,"Noah seems to have entered another one of his little downhill spirals. He will stay pretty stable for a while then gradually get subtly sicker . . . then maintain . . . then get sicker. This time we've been noticing that he is eating and drinking FAR less for the last few weeks. He was asking for things, but not eating/drinking them - then asking for things but just holding them and crying - and now he doesn't often ask and will generally cry if we offer. The exception is that sometimes he seems frantic in his desire for a drink. Even so, he won't drink much. He even refused coffee the other day. The only thing protecting his liver from the devestating effects of TPN are the calories he gets through his gut, so this is very hard to see. He is also fussier and tiring more easily. Sometimes he sort of comes back up from these downward spirals and other times they level out and become his new baseline."
Currently, Noah is in the hospital with high fevers and is sick every few minutes. The Dr.s and nurses are not certain what his problem is. Plus, he is not responding well to his medications.
Please pray for this homeschooling family of eight children (all of whom are under the weather at this time- none of Noah's siblings have Mito), read their blog, and let them know you are praying for them.
Thank you,
Lynne
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