Hi all,Im Samm….From the Uk…Myself and my Partner Will have three children,Kira 10,Shai 12,and Talia who is 2yrs 3months.Talia has WHS,and was diagnosed last April…She dosent seem to have many of the facial characteristics,but she dosnt walk,has just started to crawl,she has a hole in her heart and is awaiting open heart surgery,we should get the date in a few weeks…She was also diagnosed with Epilepsy last november after spendin 4 weeks in hospital,but the meds seem to have stopped the fits so far…She has eating problems ,dosent eat finger food…Shes very small for age ,but is in propotion,and has slow weight gain…Some things she was doing before her fits started she dosent do now,so we are trying to teach her to do them again.We have also noticed with Talia that she dosent seem to feel pain,she will crawl and bang her head for instence and not bat an eye.is this somthing anyone else has found?…Iam so glad to have found some sites that i can go on and chat to other families all over the world….Talia is a happy chilled out littl girl who is adored by all those who know her,we are very blessed to have great friends and a brilliant family.
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Hi Samm,
This is a great post. Sounds like Talia is a wonderful addition to your family. I would be interested in hearing more about her feeding troubles. Kendall has a rough time eating, mainly due to her gag reflex. I’ve never heard about a child not feeling pain. Has she ever cried because something hurt her? Please add a picture when you get a chance!