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4q 21.1 deletion

Amber097 Message
20 Jun 2016, 09:56 PM

Hello all My daughter was recently diagnosed with this deletion about two weeks ago. She was born small and they had no answers on why so the neonatologist sent her blood down for a microarray. We've seen a geneticist and they don't have any answers, nor do they seemed concerned with her. For this typical deletion I can not find any information. I had a son who passed of sids in 2015 and I'm wondering if he had the same deletion.
elliestrong Message
4 Apr 2018, 07:11 PM

Good Afternoon! my daughter was also diagnosed with 4q21 deletion syndrome in December 2017. i would love to communicate with you as i have never met anyone with this condition as it is so rare! when she was diagnosed we were told she made #10 in the world to have been diagnosed with such a rare disorder! i would love to compare stories. you can contact me personally as well at 

I am also very sorry of the passing your son. 

I hope you reach out to me as i would like to get more education and resources if you have any and whatever i have to share i will do the same!

Thank you and take care!

Kayla (Rhode Island)

haliay Message
28 Feb 2019, 07:22 PM

I have only been on Global Genes and Unique organizations and their web sites. I'm not sure how I missed Rare Share?! 
Anyway- my child is 3+ and was born with 4q21.22 micro deletion. We were told only about 48 cases worldwide! :(   Deletion was in du nouvo as both of us parents were tested. 

I still hope that there is some medical breakthrough but at this point, I only focus on 'what's next!"  We've had him in weekly PT/OT since he was 2 months old, according to the other families I've found on FB, this showed drastic improvement vs their own children. 

What's your go-to strategy? 
Thanks- Halina (MN) 

Harriet Rafferty Message
3 Mar 2019, 07:16 PM


My son is 6.5 years old and has 4q deletion, he looks quite similar to your son I think! are you on the facebook 4q deletion group? thats is where I meet many other parents and the 4q21 kids seem to have very simialr issues and I think look quite simialr!