Hello everyone

February 23, 2001

In a message dated 2/23/01 1:28:34 AM Pacific Standard Time,

DJCHRISTI4@... writes:

<< About 12 years ago, I

collected up a picture of myself at every age from 5-18. I put them

in a little photo album, and when I could, I would open these and

look at the kid that I had always thought was ugly...for alot of

reasons, but mostly because I did not believe I was lovable or truly

wanted. One day it suddenly dawned on me that I was adorable at 5,

cute and spunky at 7, obviously terrified at 14, starving at 18, etc,

etc...and I began to cry for all the dreams of childhood that I never

even dared to dream. For all the love and adoring that every child

deserves and needs to thrive that I could not at that time recall

recieving any kind of measure of.. >>

Nicky, I have had the same experience with pictures -- looking at myself at

young ages, so full of life and joyous, then, little by little, because of

both a very sick nada and adolescence, turning into a creature with dead eyes

and a pale face, her pain emanating from her very soul. I'm glad you joined

this group. It will really help you.

Love,

Lissa

January 16, 2002

Hi and welcome to our group.

I think that PMG is a sub section of Liss. Its kind of like a milder version of

Liss, with Liss beign smooth brain, and PMG being " on the way " to smooth brain

(I stand to be corrected here, if anyone knows different). PMG is manifest as an

underdevelopment of the brain surface, where the hills are small and the valleys

are shalllow. It seems to have a wide variety of effects, depending where it is

found in the brain and on how severe it is.

Our daughter has PMG spread across most of her brain and her brain is severely

underdeveloped. As a result, she has cerebral palsy, seizures, little useful

vision, no language or other communication except her coos and cries, and she is

non mobile. But she has a fabulous smile and demonstrates clearly what she likes

by smiling and laughing. Her favourite thing in all the world is to be held by

someone, anyone, and she loves movement, whether it be in her wheel chair, the

car, a hammock etc, or in someone's arms. She charms people with her cute ways

and is generally a happy child. Being severely intellectually impaired there is

much she does not understand, so her world is a very simple one, where mental

and physical comfort are of primary importance. SHe enjoys activities which are

brought to her but cant do them herself. Rather, we involve her in the activity

and make lots of fun sounds to make it more interesting for her. At school she

gets to be involved in many sensory activities.

Having said all that, there are many children who can sit, walk, crawl , talk or

use other communication methods, manipulate objects, and who may or may not have

seizures. Many can follow instructions and live an almost " normal " life. Of

course, there are many in between Hannah and this degree of functioning, so it

is very difficult to say how a child with PMG will develop, until they actually

grow older.

Hannah has complex partial and grand mal seizures (2 seizure meds and the

ketogenic diet are helping) and she too is totally tube fed (best thing we ever

did for her). She has PT and OT and speech therapy at her school, and we see the

neuro and pediatrician regularly.

I'm looking forward to hearing more about Koti, and to seeing your contributions

about her and your family.

(Hannah's mum, Australia)

January 16, 2002