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Untoldambitions Due April 18 (girl); 4 kids; United Kingdom 4 posts
18th Jan '12

My son Has ME/CFS
he was diagnosed last April and is 6!

Laura May Due February 16; Sydney, Australia 98 posts
1st Feb '12

Hi there congrats to all the mums and mums to be!! i'm not sure if it's on the list and i've over looked it but i'm 37wks pregnant and my baby girl has a limb deficiency, her right arm did not form fully and it seems 2/3 of her forearm and hand is missing on that side. i won't know anymore until she's born but would like to get in contact with people in a similar situation with a child who has a limb deficiency or if you yourself do. Any information would be greatly appreciated, thanks :))

the BEAST Wisconsin 15638 posts
1st Feb '12
Quoting Laura May:" Hi there congrats to all the mums and mums to be!! i'm not sure if it's on the list and i've over looked ... [snip!] ... with a child who has a limb deficiency or if you yourself do. Any information would be greatly appreciated, thanks :))"


I went to school with a girl with a limb deficiency. When we were little she has a hook (this was in the 80s) and then she got a prostetic (in the early 90s) but most of the time she didn't wear anything. She could do everything we all did and she even played softball in HS. Her arm ended just below the elbow (had the crook of the elbow and then maybe 2-3 inches below the joint).

Laura May Due February 16; Sydney, Australia 98 posts
1st Feb '12
Quoting bazinga!:" I went to school with a girl with a limb deficiency. When we were little she has a hook (this was in ... [snip!] ... softball in HS. Her arm ended just below the elbow (had the crook of the elbow and then maybe 2-3 inches below the joint)."


That's awesome thanks for the response!! I do worry about my bubs quality of life amongst other things and I'm so glad that others get on well without the 'missing limb', it's so encouraging :)) There is a support group up at the Sydney Childrens Hospital which we'll travel to and attend but also good to know you can jump online and have a chat about these things.

the BEAST Wisconsin 15638 posts
1st Feb '12
Quoting Laura May:" That's awesome thanks for the response!! I do worry about my bubs quality of life amongst other things ... [snip!] ... Hospital which we'll travel to and attend but also good to know you can jump online and have a chat about these things."


Sometimes the internet is just fantastic :) She's in her early 30s now and has a pretty awesome life. She just got married in the last year and is doing something environmental (something she was always interested in). We'd lost touch for a long time but recently reconnected on FB.

Laura May Due February 16; Sydney, Australia 98 posts
1st Feb '12
Quoting bazinga!:" Sometimes the internet is just fantastic :) She's in her early 30s now and has a pretty awesome life. ... [snip!] ... environmental (something she was always interested in). We'd lost touch for a long time but recently reconnected on FB."


That's great news :)) and how great is facebook for that reason!!

Katherine Weisbrod 1 child; New York 10 posts
2nd Feb '12

i have border line personalty disorder,

the BEAST Wisconsin 15638 posts
3rd Feb '12

Laura May, thought you'd be interested in this article about a 17 year old girl who has a limb deficiency :)



http://www.dailymail.co.uk/health/article-2095902/Hollie-Arnold-17-born-arm-poised-throw-javelin-London-2012-Paralympics.html

*Laik & Eli's Mama" 2 kids; Terra Alta, West Virginia 203 posts
6th Feb '12

My name is Bethany. My son, Eli, has Cornelia de Lange Syndrome. He was diagnosed at birth. I don't know enough about the disorder to tell you much yet but he doesn't have his right arm from the elbow down and his left arm goes into a point where one of his fingers grew. He has feeding difficulties and wont be able to come home until he gets a G tube.

*Riley&Caydence* 1 child; Iowa 155 posts
14th Feb '12

My daughter is special needs. It's called Biliary Atresia, I think there are only 3 of us on the site maybe 2 that have little girls with this disease, it is fatal if they can't get a transplant.



http://www.cincinnatichildrens.org/health/b/biliary/



there is a link with some information. Riley is on the liver transplant list and is 6 months old. She weighs only 10lbs 7oz she was 7lbs 5oz when born. This disease is congenital (born with it)

mamadebs Due January 14 (boy); 19 kids; Ohio 5007 posts
23rd Feb '12
Quoting *Riley&Caydence*:" My daughter is special needs. It's called Biliary Atresia, I think there are only 3 of us on the site ... [snip!] ... list and is 6 months old. She weighs only 10lbs 7oz she was 7lbs 5oz when born. This disease is congenital (born with it)"


I'll keep you and your daughter in my prayers. I hope she gets a transplant soon!

*Riley&Caydence* 1 child; Iowa 155 posts
24th Feb '12
Quoting mamadebs:" I'll keep you and your daughter in my prayers. I hope she gets a transplant soon!"

Thank you!
We hope so too!

Jessica + 2 34 kids; Texas 7364 posts
27th Feb '12

im the last jessica under the parents with disorders, i have one more to add
i just found out i have methemoglobinemia. It explains my blueness lol



and my daugher audrey has PDD-NOS and Sensory Processing Disorder

Rachel Karr Lanesville, Indiana 3 posts
21st Mar '12

my baby boy has spina bifida

Damien*Dex*Jaidyn's Momma 18 kids; Pennsylvania 1535 posts
23rd Mar '12

My first son Damien had downs syndrome. He did not make it past 32 weeks when I was pregnant. The doctors believe that his kidneys failed. At the time we did not know that he had downs. I was just wondering if there is anyone else who has a child with downs or their child passed away. It has been almost 4 years and still have a lot of problems dealing with this.