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Dear Jens,

I have an almost 9 year old exuberant, gorgeous, healthy boy only recently

confirmed in diagnosis (last year). (although currently he has a broken arm

from soccer!!) As says, time helps, heals, and we do learn to watch and

wait, and it is hard, wouldn't wish it upon anyone.

Re: your early diagnosis.....they think it is possible Louis had his two

meningiomas since birth, definitely they think his cataracts were there from

birth .

So whilst your baby may appear to be the youngest with this disorder,

looking at it another way, I suspect they are just picking it up earlier

these days....more confident about making the diagnosis. and that is a good

thing for him, but very hard for his parents, I know.

Stay close to us. the crew will keep you afloat, guide you, and offer

invaluable advice/feedback whenever you need help. Do you have any immediate

problems to deal with, or is Monday counselling and mapping out a schedule

for monitoring? rosemary.

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