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Hi All..

My son Ethan who is nearly 5 was diagnosed with BPES when he was just

over 1 year old.. There is very little support here in New Zealand

and I know of on;y two people in NZ whose children have the syndrome.

I am very keen to correspond with others who are Mums of BPES

children. My son had the operation to correct his ptosis at 2.5 years

of age and the difference in his outlook is incredible. He is due to

start school in a month which i am finding a great challenge as he

also has developmental delays and is still unable to be toilet

trained due to his low muscle tone.. I have photos of Ethan before

and afetr his corrective eye surgery that i would love to share and i

look forward to chatting with someone who knows what it is all about.

lease contact me

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