Hi, My name is Danielle, mother to two beautiful boys, Alex and Adrian. I learned in utero that my youngest son, Adrian has 4q33 deletion, which is a partial deletion of the 4th chromosome. It is very rare. I did my research on the internet, but as any parent, I want to hear real stories and details if there is anyone willing to share. Adrian is only 10 weeks old and although I understand that every child can show different symptoms, I would love to hear about what I can possibly expect in the future. Sincerely, Danielle (Mom to Adrian, 4q33 deletion)

I Danielle! I'm the mother of a 18th months old girl W/ the same del! Luckly she's doing great. By now she has no medical issues and no delays If you want add my e-mail: mafalda.vala@hotmail.com You can also join the 4q family on facebook groups!

Hello, my name is Barton. I am the father of 3 boys. Our youngest Michael, was born with distal 4q 32-34. He is 15 yrs. this month and we are so proud. He has fought hard and is doing great. At the time of his birth there were only 22 reported cases. 15 of those died before 15yrs. Back then the doctors gave us little hope. He was born with Pierre-Robin syndrome (Small jaw and large tounge), a hole in his heart and unclosed ductess vein in lungs. Double hernya, deformed hands, and elongated feet. So far, he has had 2 Fundo placations, Cleft palet repair, Exploratory sergery, witch they found his appendex inflamed and in the wrong location. followed by appendectomy. One sergery on his hand, with no success. He had a traciostomy for 2yrs. and we fed him with a tube. Needless to say my wife and I were devistated. (pls excuse my spelling) Now some good news. He is doing great. He is ADHD and on medication. To look at him you would never know he had a problem. Everyone in town knows Michael. He is a little behind mentaly but otherwise he's a BOY. Hope this little bit helps you some. Makes me feel better just talking some about it.. All in all just LOVE THEM...

Hi, my name is Danielle, my daughter is 8 yrs old and has a interstitial deletion occuring denovo of 4q32.2-33. I have not found many with her similiar deletion. I also have not found a doctor who will see her and just do a general workup on her. She has urological issues that we have dealt with since she was an infant and just recently have found out she has a genital malformation and thats all we were told is that it was not normal and no other information. We live in the US, not sure if any of yall do. I was wondering really if yall had any info on anything. drs, behaviors, sickness, infections, education issues. I have lots of questions with no answers.

Hi, my grand son has also 4q33 deletion. He is now 9. It seems condition varies - he did not have any internal problem but he has cleft pallet, over wrapping toes, pointed pinkies with double joints. 3rd grade work is getting difficult and still have hard time adjusting new situations and dealing with his emotions. I would say he is emotionally immature. Since there are few of them and the condition varies so much that we have no idea what to expect. I was hoping to find older children with the same condition but so far I have not. I think we are in a same boat - lots of questions with no answers! He sees regular docs, speech therapist and in a process for behavior diagnosis.