My little fighter

[Keaginsmommie]

Hi my baby boy has chromosome 14q and 18p partial deletion along with translocation of 14 to 18 we were told he was the only one there is like him have no answers we were also told he wouldn't live a month and if he did he would be a vegetable he is now 10 months and is doing lots of things he is a bit delayed in some areas but he is alive and well he still requires O2 24/7 if any one out there can help me begin to understand any of these disorders I would be so grateful I am at a loss and I'm afraid I am getting more and more depressed I have been so strong thru it all and still am I have hid alot of my feelings from my family and friends cause none of them understand what it's like to be a mother in my shoes I really need the support of people who can relate to me and my little angel Keagin thanks in advance to all who contact me my email is [email protected]

Sorry, i have no advice for you but just wanted to say hi and welcome to the board

Have you contacted the organisation UNIQUE:

www.rarechromo.org/html/home.asp

They could put you in contact with other families. Or ContactAFamily:

www.cafamily.org.uk/

Special Kids in the UK has a forum which is very good:

www.specialkidsintheuk.org/

Hope this helps

Mini-moan

Just dropping in to say "hi", and that you are among friends on these boards, so no need to hide your feelings here if you need to let them out.

Have you contacted 'unique' - www.rarechromo.org?

That would be my first port of call.

Special kids in the uk (another forum) also used to have a fair number of children with different deletions etc, and be quite up on support groups for different things. Contact a family could also help? Www.cafamily.org.uk

Lots of support on here though. The first couple of years are so hard. Remember to be kind to yourself as well x

Lol minimoan, that's hilarious x post.

Great minds, and all that

Hi, another welcome here. Sorry I have no knowledge about your ds' condition but I know there are other posters on here who have dcs with rare conditions. There is a link here to UNIQUE www.rarechromo.co.uk/html/home.asp the support group for rarechromosomal disorders.

Great to hear your ds is defying expectations and doing so well.

Thanks all for the info and kind words I need good friends that understand

I feel stupid but what does ds mean

DS is short for dear or darling son there's a link here to all the confusing abbreviations and acronyms on mumsnet:www.mumsnet.com/info/acronyms

Another one with no useful advice, just wanting to welcome you to the board and let you know that there is always someone here to listen if you need to talk.

I have no advice either but wanted to say welcome to this board :)

Glad to read your lovely son is defying the doctors! Thats down to you and him together :)