Down syndrome or trisomy 21 is a genetic condition resulting from the presence of all or part of an extra 21st chromosome. Down syndrome is characterized by a combination of major ...
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I have been feeling very lost lately in my own community. My sister-in-law suggested checking out an online group so here I am. I am a 25 year old mother of a beautiful little boy with down syndrome. He was born with several problems, Downs being the least of them, so I really didn't have much time to I guess absorb the reality of having a child with a disability. Now though I find myself getting so frustrated and I don't know who to talk to since I don't know anyone who has had similar experiences even in our down syndrome group. Is there anyone going through even kind of the same thing?
Posted on 06/14/07, 08:06 pm |
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hi how are you my daughter grace who is 6 now had a heart operation when she was 5 weeks old the doctor told us no glasses but now grace wears then had her tontsils out abnords as well grommets in her ears never new any of that was going to happen take care xxxxx p.s sorry about the spelling 
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I know how you feel I felt the same way I still do sometimes. But the thing is you have that beautifull baby and nothing else should matter. I know it is hard but I know it will get better. If you need to talk I am here for ya.
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Just wanting to say hello. I have just found this site this morning. I too have a daughter that is 22 years old with Down's Syndrome. So if I can be of any help to you, friends, or family please feel free to contact me. Take Care, hoping your new friend, Jan
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I am a 23 year old mother of a little girl (who is one week shy of her first birthday) that has down syndrome! I have been in your shoes...Before Emily was 6 months old....she had 2 open heart surgerys..a heart cath...feeding tube...feeding pump...12 meds..and pulmonary hypertension..well the list goes on...and I was the only one caring for her (puting the NG tube in and everything )The thing is...I know that right now you probably feel helpless and frustrated...but it WILL get better. Place your faith in the Lord...and be strong for that baby boy...you ARE doing a wonderful job and its not easy...but it will get easier. I never had time to think about the DS until after Emily was 7 months old.. and the DS doesn't bother me one bit... I feel VERY blessed to have been given this precious, unique, vibrant, loving little girl, and I promise...one day you will feel the same way. Take it ONE day at a time babe..and you will get there!!
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Hi.Welcome to you. Firstly i want to say congatulations on your lovely baby. I have a 16 month old called katie. She too has had problems and had to have heart surgery at 6 months old. She is still tube fed as she has a poor sucking reflex. Although she is making progres with solids. She is due to have her nasel tube replaced with a tube in her tummy. She has phisio, portage,etc, so i know how busy your life will be. If you need any advice this site is really helpful. Please contact me if you need a chat.Nice to hear from you maria xx
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Hi just wanted to welcome you and your little boy. My little girl Amarli is 8mths old, and we have been blessed so far with no medical problems. I'm sure things will get better for you and your son.
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