Doing everything

[Guest guest]

My daughter has a much different picture than most of the kids diagnosed

with mito. Instead of gaining and then losing skills, mostly she has never

had them. It took nearly two years to sit up and five to take her first

steps. She is 9 now, and has no diagnosis except lactic acidosis. She is

considered severly to profoundly mentally retarded and is not expected to

advance cognitively beyond 2 years.

That said, I think that while it's the right thing for some to do

everything, it may not be for everyone. Like Lynne, I'm terrified that I

will find out something after it's too late - and to some extent for me that

means now. PKU used to be an incurable disorder that caused children to be

mentally retarded from birth. Now we know that by affecting diets of

pregnant mothers and diets of children who are PKU positive, the results can

be significantly improved and those who we used to see become profoundly

retarded are often mildly or not at all. I can't imagine that knowledge

being discovered when my child with PKU was 6 years old - I think the pain

might be more than I could handle. At the same time, if we found out at 6

that diet could maximize her abilities, we'd adjust and do as much as we

could.

The thing is, she is going to be herself no matter what we do. Better diet

makes people healthy, and if supplementation makes a difference, we should

all take advantage of it (One-a-day vitamins for everyone!) All children

head down their own paths, and as long as you love your child the rest will

go along with it. Don't ever be worried about too much or too little,

because the love with compell you to do what you should, and usually at just

the right time.

This also applies to siblings, spouses and yourself!

Kathy

Kathy

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