We just wanted to let everyone know that we got the test results back from Reese’s genetics test and she does not have Wolf Hirschhorn… She has an even more rare deletion on her 5th chromesome 5Q22. I am a little sad its not WHS because I have found so many support groups… there are none for 5Q-
We will be meeting with her Genetics Dr to talk more about all of our concerns. Im not gonna lie, I’m feeling a bit helpless right now.
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I’m sure things will be fine. You have a beautiful family.
Hi,
I say 5q- or 4p- does not matter. You still have a family to help support you here. Keep us posted on the updates with your little doll. Let the emotions come over you while at the same time enjoying your time with Reese.
Thoughts and prayers coming your way.
Cheers,
-Jenn
I completely agree with Jen. Don’t let this be the last we hear from you. There are so many similarities between children with any type if chromosome deletion so you can still benefit too. So while you’re trying to learn more about Reece’s diagnosis keep us informed and continue to share news of her beautiful life. The whole idea is to see our children for the unique little persons they are and not their chromosomes! So you belong here. I adore the pic of the 3 of you!
Oh my. That is rare. I can understand your feeling of helplessness, but I hope you will stick around our group and allow us to be your support group. The very brief reading I did on it makes it sound like very similar characteristics to 4p-, and really the emotions of you as a parent are likely to be the same regardless. Are you on Facebook? You can find me at heather kirsch white, if you would like to talk more. I hope to hear from you.
Yes, I can imagine the thoughts and feelings would be the same. We certainly can relate here. Hang in there, we support you! Beautiful picture, by the way!