New to the list

[Guest guest]

,

I myself do not have a child with Leigh's, but have a 19 yr old nephew

who was diagnosis with Leigh's as an infant. My sister was told he

would never live to be 2. Apparently they were wrong. Does anyone on

the list remember someone posting a link to some newspaper stories about

a young lady with Leigh's who had college degrees? Am I remembering it

correctly? I'll try to go back over my messages and if I find it I'll

send it on to you.

Barbara

Mom to 5, Max, almost 3, reflux and speech inconsistencies,

Corbin 17mths, possible mito, reflux, asthma, encephalopathy, oral motor

and motor planning dyspraxia and now mucopolusaccharides in his urine

[Guest guest]

Barbara,

Thanks for the encouragement. We were told in October when when Margaret had

her developmental regression that she would not improve. She has already

improved a great deal, so I am learning to not believe all of the bad things the

doctors tell us.

[Guest guest]

Anne-Marie wrote:

> Hi Everyone,

>

> I am new to the list. I just turned 40 yrs. old, and was diagnosed

with

> Mitochondrial Myopathy in 1996.

Welcome to the list. I'm sure you'll find lots of great information and

support here.

> I have been on this list for about a week or two and have noticed alot

of

> children are inflicted with mitochondrial disorders. I almost

unsubscribed

> from the list b/c I thought I really didn't fit in with your family.

There are many of us with older children and adults ourselves that are

also afflicted, so don't feel out of place at all. We all have a lot to

learn, and we all have a lot to share. I have three children that have

been diagnosed with mitchondrial cytopathy, but only after my youngest

was so severely affected that she eventually was biopsied. My older two

children were less symptomatic and all that we ever knew was that it was

something genetic. But they are both nearly adults now, 18 and 21 years

of age. I too was recently diagnosed and there is a lot that we all

have in common.

It is always encouraging for me to talk to other adults, or those with

older children that have " lived " with this disease. When my youngest

was first diagnosed, the original prognosis was so poor. Now it is

truly amazing to see the number of adults that have lived successful

lives and yet struggled with this overwhelming disease.

> I feel so useless sometimes. I can't do much at all, and most of my

friends

> don't bother much with me anymore for I am always tired and too weak

to do

> anything. I really can't blame them, I wouldn't want to be around a

sick

> person all the time. I try so hard to be normal, but I can't.

Has your doctor prescribed any of the supplements, or carnitor or Co Q?

These have made a tremendous difference in the amount of energy I have,

and what I can now accomplish. There are also several triggers that we

have learned to avoid, as well as diet manipulations. Everyone is so

different that no one thing is the miracle cure for everyone, but there

are definately things that you can do or try to improve your quality of

life.

Welcome,

Jeannine