are all angels the same!

Ashley - posted on 04/27/2010 ( 3 moms have responded )

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i have been having a hard time with this because some angels i see look and act much better then makayla is ther different types of angelman . some angels stand better eat food and other things like that .am just wondering is makayla on the more severe end of this and what can i do .IS there anything i can do . my heart is breaking way is this so hard!

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Heather - posted on 04/30/2010

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My son is on the severe end of the spectrum- we actually just got the dx 2 wks ago, he's 6 Jacob actually has an insertion on the UEB3A gene- not really sure exactly how that differs from the process.

This process is very difficult- I hear you there. I've had my fair share of poor me moments! But then I look at Jacob, and think about how happy he is, and he's flourishing at school and home. He's just starting to be able to walk around in his gait trainer, sleeping's finally gotten better after many yrs of struggling. I think my turning point was when I realized that Jacob is happy- we're doing every kind of therapy we can, and he's still very slowly progressing. I decided it was my job as his parent to do what's best for him (not for me- that was hard to come to terms with) and to relax and enjoy the small things of life. He's taught me to appreciate the small things, and once I was over the grieving process of what I thought my family was going to be like, I started to dream new, smaller dreams for him and us. First eye contact, first smile, first friend at school, first step, etc. I finally decided that Jacob doesn't know what he should be doing and isn't, just what he can do and what makes him happy- and that's pretty cool!

Ashley - posted on 04/30/2010

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i know makayla is deletion+ because the doctor told me but i didn't know about the other one and now it kinda makes senses . seeing other angels do things makayla doesn't i couldn't understand but thanks for the reply it did help!

Stephanie - posted on 04/30/2010

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Ashley, there is no one way in which an angel is. There are no different forms of Angelmans, however, and this kinda gets confusing, there are two ways a person acan get angelmans....deletion and mutation of a gene. Deletion accounts for 70% of all cases. Having a mutation means you have the gene but for whatever reason it mutated. These angels are usually a little more developmentally ahead of those with deletion. You can have a test done to see if its a deletion or mutation, but it kinda doesn't matter because really there is no different types of angelman's, its just how you get it. Every angel exhibits common traits, but just as no two people are alike so are our angels.Hope this helps.

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