Re: I Will Try to help!

[Guest guest]

My name is and i had a 6 month 8day little angel she passed away on

thursday 15 she had lieghs dis. it is part of mito dis. They told me in Jan

2003 that there was nothing they can do for she got worse not better it

really does depend on the dis if it moves fast or slow s moved very quikly

she was dinosled in Jan and made it til May but you can get a nother opion if

you want . Where are you from? They did a buipsy on her and it showed nothing

for her it was a mir and her symtoms she first started by holding her head

back in a arch and would not let me support it like it was easy for her to

breath like that then her eyes was always in her head and she lost control of

her

head it was real wobbly then she started having jerks sighns of sezuries and

from there it just got worse Hospice was with her for 3 monthes they are good

you dont pay for nothing for her but clothing and diapers they pay for the rest

and you can sighn your child up for SSI your friend shannon

[Guest guest]

,

I have not posted to you but I have read all of your posts. I have been rather quiet lately. My name is Kathy, I have a granddaughter, Audrey 21 mos who has unspecified Mito. Her mother, my daughter is Amie. Audrey also has had multiple problems since birth but we didn't know for sure if was mito until she had a muscle biopsy last June.

Anyway, I just want you to know we are all thinking of you and you sweet angel. Please know that our prayers have been with you daily. This I know has been the worse time of your life. How is your 7 year old doing? Is that one a little boy? What is his name?

I hope you are near a lot of your family so they can engulf you in their love and wrap their arms around you and help to comfort you at this difficult. Where are you located?

, I am going for this time, but keep us posted about how you are doing. We will always be here for you.

Kathy, grandma to Audrey, 21 mos