[abbiesmum]

hi
my names is kelly i have 3 daughters aged 9, 6, and 13 weeks my yougest Abigail [ Abbie] has a chromasome dissorder called Trisomy 9p. as she is onlty 13 weeks we still dont know to what extent she is going to be affected by it.
at the moment she has feeding problems, she is very floppy and has very little head control she has hearing and sight problems and has sesures.
she is a beatiful little girl and always smiles.
we are still rying to come to terms with her condition and have been told she will have modarte to server learing and physical dissabilties.
sorry about spelling not my strong point
kelly

[johnvb]

Hi Kelly,

Thanks so much for taking the time to join the forum and tell us about your family. I hope we can all offer a little support for you in future, even if its only a place to "let off some steam"!

I'm not sure if you are aware but Channel 4 have been doing an occasional programme called Born to be Different which has been following the lives of a few families affected by special needs. One of the children featured is called Shelbie and she has Partial Trisomy 9p. If you do get to watch any of this series its important to remember that disabilities are often very different in severity from person to person, and I think Shelbie's case is a particularly difficult one so many of the problems she faces will hopefully not affect Abbie. The mum is a source of inspiration in many ways though - she is so determined to live a normal, full, family life with all her children.

This is obviously all very new for you and your family, but are you happy with the support you are getting from health visitors, doctors etc? There are many charities, benefits and different options that can help make life a lot easier but unfortunately it seems far to easy to slip through the net and not find out about them. If you have any questions in this area we'd be really happy to help.

Kind Regards

John

[abbiesmum]

hi
yes i saw born to be diffrent and cried all the way through it was on just after we found out about Abbie and i know she is not that bad cause she dose not need oxgen or anything like that.
thanks for the welcome.
kelly

[kellymum]

hi kelly
welcome to the site , its a great place
I cant offer you any advise but didnt want to read your post and run.

Take Care 

[pixie]

A big welcome from me too.

My 3 are Autistic and mostly adult now but one is 15 so I still pop in here now and again.

[paula]

Hi! Thanks for taking the time to join us! Hope you will find the forum useful - there are a great bunch of people here who will always lend a listening ear. Adjusting to the fact that your child has a disability is massive and will be a long and rocky road, but there is support out there if you need it. My only real advice is to take each day as it comes and hold onto the beautiful things which make your daughter so special. Don't forget too that it is you and not the professionals who know your daughter the best. We were told that our son might not walk and now he is running and similarly, our daughter''s prognosis was that she would have severe learning difficulties which is not the case at all now. This time is incredibly hard and all our thoughts and best wishes are with you.

Looking forward to hearing how you are getting on

Paula

[Julie]

Hi Kelly

Just wanted to say "welcome" to you too.  It's a great site for all of us, and we look forward to hearing your news.

Best Wishes
Julie

[Speeds]

Hi and welcome from me.  I have a son with Prader Willi Syndrome which is chromosomal.  He had feeding difficulties and is still much floppier than his peers. 

The road may be rocky but we are all here to help you get over those bumps.