Hi all My name is Ghadeer I'm from kuwait I'm a mother of 2 boys One with 3p25 deletion I need to have a conversation with people who would understand what I'm going through and the difficulties I'm facing with raising my son And also I hoped to learn from your experience If you have any advise for me ..

Hey my name is Andrea and i have 3 children. the middle one has 3P25.3 intersial denovo deletion. I have done some researchand am willing to share information it you are interested.

Hello Andrea, can you please share the information you have pertaining to this genetic deletion. I have a six year old daughter that was just diagnosed a year ago with this problem. Genetic testing showed she had this syndrome but I think I will return to the geneticist for further clarification.

I would love too answer any questions. I am on Facebook and YouTube I have made videos of my boy if you want to take a look. I think he has sensory issues but the medical people take forever here. He also dosent talk but uses some signs. If u want to talk more search my name on you tube. Andrea

Hi guys It seams that this deletion's symptoms is really random and it's Diff. With every child I got a lot of info from from rarechromo .org Unique You can follow them in twitter or you can email them and they will connect you with other families with the same deletion But like I said it varies some kids severely affected and some has few difficulties My son is definitely have a sensory disfunction Also farsighted and he had a tosis ( droopy eye lid ) fixed by operation He will be 3 years old doesn't walk but he crawls suffers from low muscle tone especially in his legs has a very poor balance I hope he'll walk soon with physiotherapy He doesn't talk or make signs or anything Just crys or makes strange sounds if he sees me He doesn't eat by himself doesn't chew only eats with spoon I hope I could help but as you can see I don't have answers Time will only show me how far can he get I have no expectation but I wish him the best and I will never lose hope I wish you the best it's a hard life Stay strong : )

Hi, my currently 7-month-old baby girl has a small deletion of 3p25.3 as well as a large deletion of 3p26.3-p26.1.  Her features currently include feeding difficulties (slow eater with small/erratic appetite, reflux); some hypotonia in the neck area (affecting eating, head control for gross motor skills, and communication); and developmental delay.  In terms of delay, she has sometimes rolled over by herself in her crib at night, but she cannot or will not bear weight on her arms to "push up."  Her head control is still iffy at times.  She has always HATED tummy time--screamed bloody murder and cried real tears--in any format, even on our chests or laps. As a result, she has developed some plagiocephaly and will wear a helmet for awhile.  She has only just started to babble a little bit, usually saying "oo-la" or "ma-ma."  She also has milk protein intolerance, although I'm not sure if that's really a result of the deletion as it is not mentioned in Rarechromo.org's brochure.  She was born with a very small omphalocele and VSD, but these were ultimately of no long-term concern. She has an anomaly of her left optical nerve, but the neuro-ophthalmologist considers it to just be an anomaly so far and nothing of consequence; her vision is good for now.  I am still waiting to see the geneticist, neurologist, and audiologist. She is currently receiving physical therapy and speech therapy and being monitored by a gastroenterologist and dietitian as well.

I am wishing you all the best on this difficult journey.  Feel free to message me at any time.