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Hi Everyone!

My name is and I live in Texas. My daughter Margaret is 18 months old

and has tentatively been diagnosed with Leigh's syndrome. Margaret started

having infantile spasms when she was 7 months old and at that time she was

mildly developmentally delayed. Her seizures are currently controlled with

Vigabatrin and phenobarbital. In October she had a dramatic developmental

regression and was unable to do anything, reverted to newborn reflexes, had

tremmors, and no movement to speak of. She also had a great deal of trouble

swallowing and sucking and stopped eating solids. We went to Texas

Children's hospital and had an MRI which was severly abnormal and her lactic

acid levels which her neuro has been monitoring for months are always in the

3's and 4's. The geneticist at Baylor college of medicine did a muscle

biopsy and placed her on a several vitimans and we have seen great

improvement. However the first set of test from the muscle biopsy looking

for Melas, NARP, and various others and her respiratory chain tests came back

normal. Now they are testing again this time for something called a mutation

of SURF 1. The doctor also said we may not find the specific mutation

Margaret has. I am very excited about this site because my husband and I are

quite confused by all of this and loosing faith in the doctors because we are

not getting specific answers from all of the tests. We also have a six month

old son and are worried for him, although he is develpmentally doing quite

well and is very healthy. I was wondering if any of you have children with

Leigh's syndrome? Is the prognosis for mitocondrial disorders really as poor

as everyone says? we would love any information.

, mother to Margaret and