Hi,

My little boy was diagnosed with cri-du-chat syndrome when he was 3. No one would listen to my concerns before this.  He is 7yrs now and its been a long hard struggle but I wouldn't change a thing about him.  He has a partial deletion of short arm of chromosone 5.  We are guided through with alot of things with a genetics team. He has developed alot of things wrong with him but he shines in his own way.  Try catching him out with things about dinosaurs!!! He knows the lot.  With this syndrome you can claim DLA and Carers allowance and a whole load of other stuff.  I put everything extra I get into a trust fund for him.  Need any help or have concerns al try to help you.

Hi

I just wanted to say, I know what you're going through. my daughter has a rare chromosome disorder and it was a struggle finding info on it. Then I contacted Unique - Rare Chromosome Disorder Support Group and they were amazing. So amazing that I joined their staff last year!! There's a Cri Du Chat syndrome support group - www.criduchat.co.uk and they're meeting next  month. You can also contact Unique - www.rarechromo.org or info@rarechromo.org if there's anything you feel we can help you with.

hope this helps.

Satnam

Hi there,

I don't have experience of Cri du Chat but I know of it from one of my children having Cornelia de Lange syndrome which is caused by a fault (mutation) on the 5th chromosome also.  I know  how hard it is when your child has a rare syndrome, to find another family with the same one, it's a problem for me as well!  Just wanted to say I hope you  find some support groups where you can meet some other families.  I joined a cdls one and it was great to meet some other children like my son, and to speak to other parents, who can be a great source of information.

hello i dont have any experience with this syndrome however i typed it in to the comp and there was lots of info and support groups out there not sure whether you want to try those? Hope this helps. Take care xx

Hi there, my only experience of Cri is when I was training as an OT in Hugh Ellis Paed centre in Oxford, I met a litle boy who was newly diagnosised.. common traits are a flat skull, unusual noises, some developmental difficulties...however none of these are definates for your LO ..and 13 years ago... it  was not a common diagnosis..(I'm not sure if that's changed or not) ...but in all my working years I've only come across 3...

I hope this helps ? (althought i'm not sure I've said much ) ..hugs to you as you could probably do with as many as possible... remember..nothing is written in stone...

thank you all!! ive been on the rare chromosone disorder website and it looks good!! x xif anyone else knows anything or can help please do! x x

Hello, Never heard of this before but I saw in another post of yours that it is a chromosome deletion, My son has a 9p- deletion and we have found Unique really helpful they have given us lots of information and they also put you in touch with other people who have the same chromosome issues. WWW.rarechromo.org

Really hope it helps I remeber how I felt being told about my little boy so big ((((hugs)))) to you.

don't know anything about it hun, but a charity called contact a family http://www.cafamily.org.uk/

may be able to put you in contact with someone in your area

there may be someone local to you who can help you, and give you a ear to bend and give advice

my 4 month old son has bee ndiagnosed with Cri Du CHat Sundrone and i was wondering whether anyone else has experience of this?!