Re: how do you get the ER dr to listen?--SUE

[Guest guest]

thanks for writing about your son getting ready to turn 11. my 5

year old daughter was dx with leighs at age 2, so we already feel

very lucky. happy birthday to him! and thanks for giving me that

extra hope!

bethany

> Just wanted to pass along that our little fellow who has Leigh's

will soon be 11 years old. The doctor's told us when he was

diagnosed at the age of three, that he would not live past seven --

but he has proved them wrong -- in a big way! Although he has many

issues, his health is much better now that it was at the time of his

diagnosis. I know that things can change in the matter of seconds --

but just wanted you to know that sometimes no one's best guess can

predict the future of these astounding kids!

>

> Sue

>

> Re: Re: how do you get the ER dr to listen?

>

> BTW - Dr. Shoffer told us that Ellie's Complex IV Leigh's will

most likely take her from us between the ages of 5 and 8. Needless

to say this was like a punch in the stomach...he said her believes

her issues to be in the " SURF01 " chain. Because of the difference

in her MRI's between 9/03 and 9/04 he feels she will likely regress

with more brain lesions and " probably " respritory issues. I liked

Dr. Shoffner, but he is very blunt. What do you all think?