Introduction - Ari's aunt

[Guest guest]

Hi all

My name is Cyndy. I have three healthy, mostly grown children, ages 18-26. My sister, le, gave birth to Aristotle on April 22, 2002. He seemed healthy at birth but didn't smile a lot like my girls all had, and I was concerned even then. As he grew older, he didn't grow, and eventually, his doctors became concerned. He threw up a lot, was diagnosed with reflux, had an operation and eventually had to have a g-tube. He still didn't grow much, and at 16 months only weighed 13 pounds.

We started hearing about mitochondrial disease after the operation to fix the reflux issue, but doctors were still unsure. They don't know much about it here in Louisville. A muscle biopsy was performed and examined by local labs and was inconclusive (mostly because it wasn't sent to the right folks for testing.) A second muscle biopsy was taken in August, 04, and that too was not sent where we were told it should have been sent (Atlanta.) Ari had an MRI in August 04 and another in November 04 that show increased lesions on his brain (increased from August to November.) I think he started having seizures in September.

The past fall, he became ill with pneumonia and had to be hospitalized. His lung collapsed, and a decision had to be made in a hurry to put in on a vent or let him go. We were not ready to let him go, and he is now on a vent, fairly stable and at home. His mom, dad, grandma, big Bro, and a lot of nurses do what they can to keep him comfortable and out of the hospital. Mom and I live right next door - one on each side of my sister's house.

Ari has virtually no skills, and mostly just grimaces and flails his one good arm when company comes to call. He has gotten big, the g-tube and Pediasure are doing their job. He's about the size of a normal two year old. He just got a special chair, which he seems to enjoy, and his mommy hopes to take him out someday soon.

I don't write or contribute much here because Ari's situation seems much less hopeful than others, and I don't really have much knowledge or experience to pass along. I do pray for all your children, and hope that someday modern medicine catches up with this heinous disease that robs us of our children.

Best wishes,

Cyndy , aunt to Aristotle, age TWO!, with Leigh's

Ari's caring bridge page is located at \ky\ari

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