I stumbled upon a great website the other day - http://www.mitoaction.org/
Mito Action is meant to educate, support, and advocate for families dealing with Mitochondrial Disease (Mito). Mito is a genetic disorder where mitochondria of the cells fail to produce enough energy for cell and organ function. Mito can cause poor growth, weakness, neurological problems, delays, and diseases of nearly every organ in the body. The prognosis is really unclear - some people live fairly normal lives, while others are severely compromised.
There is so much more to learn than I could ever tell you - head on over to Mito Action to read more and to get involved.
What brought me to the page was a book that the organization puts out. It's called When Jeremy Jones' Stomach Stopped Working: A Story for Children with G-Tubes.
Jeremy's a fun, active kid. He sings during class and catches tadpoles in the creek. He also has gastric dysmotility, which means his stomach feels very full after only a few bites. He gradually loses weight, and has less and less energy to do the things he loves doing. Jeremy needs a G-Tube, and we learn more about them right alongside him. Jeremy loves his new tube, and it helps him grow strong and tall.
Mito Action was kind enough to send a book to Aidan. I am looking forward to reading it to him and using it to explain to and educate others about G-Tubes.
Mito Action is meant to educate, support, and advocate for families dealing with Mitochondrial Disease (Mito). Mito is a genetic disorder where mitochondria of the cells fail to produce enough energy for cell and organ function. Mito can cause poor growth, weakness, neurological problems, delays, and diseases of nearly every organ in the body. The prognosis is really unclear - some people live fairly normal lives, while others are severely compromised.
There is so much more to learn than I could ever tell you - head on over to Mito Action to read more and to get involved.
What brought me to the page was a book that the organization puts out. It's called When Jeremy Jones' Stomach Stopped Working: A Story for Children with G-Tubes.
Jeremy's a fun, active kid. He sings during class and catches tadpoles in the creek. He also has gastric dysmotility, which means his stomach feels very full after only a few bites. He gradually loses weight, and has less and less energy to do the things he loves doing. Jeremy needs a G-Tube, and we learn more about them right alongside him. Jeremy loves his new tube, and it helps him grow strong and tall.
Mito Action was kind enough to send a book to Aidan. I am looking forward to reading it to him and using it to explain to and educate others about G-Tubes.
That is great! I'm constantly shocked and awed at how supportive and loving this *community* has been. How wonderfully giving people are sometimes.
ReplyDeleteI am too :) There are so many resources out there, and so many people who understand.
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