#1
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Hi my son has the following conditions:-
Pierre Robin syndrome. Cleft palate. Bi-lateral clubfeet. Multiple epiphyseal dysplasia. A rare skeletal condition that effects all of his joints. They dislocate and are hypermobile. He has abnormally big hip bones, and elbow joints. He becomes very tired when walking.

I would love to talk to somebody who knows what it's like living with these conditions. I can't find anybody with the MED condition to talk to, as I wonder what the future holds for my son.

Kindest regards.

Ginny
#2
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Aw hon, sorry I can't relate as my little fella has ASD but didn't want to leave you with no replies. Have you tried contact a family to see if there is someone in your area? Or does the condition have it's own website with a meet a mum type facility on it?

Hope you find someone soon x x
Keely x
#3
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hiya this doesnt relate me either but thought id write a post and say im here if u ever wanna chat i might not have a child with the same condition as u but can always chat if u like xxx
Heart Smile tasha n lara-leighSmile Heart
#4
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Hi Ginny,

Like the others here that have replied to you ..I dont have a child with the same conditions as your son, however I do have a baby girl who has a rare chromosome disorder that doesnt have a name and only effects 23 other people in the world. I totally understand how it feels to not know what the future holds ... we've learnt to just take it a day at a time with her and just make sure she has the best possible chances in life...it is very hard though and I still look out for that magic wand.

We joined a charity called Unique that have been fantastic with helping us contact familes in a position like us and they have actually given us more information on our daughters condition than the doctors.... These guys maybe of help to you too as from what you've said about your sons condition i'm guessing its very much like a chromosome disorder? x
#5
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Hi Ginny, I too (Like LittleGemsMum) have a son who has a, well two, very rare chromosome disorders. He was born with a cleft palate, although he has had it repaired now. He's just turned 2, he had the repair done at 16months. He also has hypermobility. He is not crawling or walking yet so the effects of this are not too noiticeaeble at the minute, although his fingers are sooo bendy, it's quite apparent when he is manipulating objects.

How old is your son?

Sally x


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