Hi, I am Karen mom to Lauren 16 and Mathew 8 both with 1p36.3 deletion. We live in NW Georgia and are always excited to connect with other families like ours.
My grandson was born with resently and I thought maybe this would give me more insite
I am a thalassemia trait carrier…
I am sorry to say that I don’t have much time at the moment - so - in a nutshell - I’ve had RSD for over 8 years, now (it has spread globally) and I am interested in everything to do with RSD - especially the opportunity to meet others with my disorder (as I find it so very difficult for the “outside word” to understand just how much it impacts our daily lives!). Thanks for listening 
Annabelle
I am Michelle. My son Josh has 1p36 deletion syndrome. Many of you already know me from the other groups. Josh just turned 5.
i have a son who has 1p36deletion
My son has 1p36 deletion syndrome.
Our son is 9 years old. He was diagnosed with 1p36 Deletion two years ago. We do not know of anyone with this disorder, so it is nice to be able to read what other people are seeing/experiencing.
Our son is amazing! He inspires us daily.
I am a parent of an eight-month old patient diagnosed with Monosomy 1p36 deletion syndrome. I am interested in support services for parents and families who private full time home health care and caregiver services.
I am interested in this condition because my daughter has something similar so I’ve heard, and as I’ve read along through these sites I think they are very similar. My daughter, Grace, has trisomy 1p36 duplication. There isn’t much information out there on this, but like I said, have heard that this is the closest. I have seen pics and read a lot about the kids that are on here, and have this deletion, and there are a lot of things that hit close to home. My daughter is 14 months old, and is very far behind and were just told that she’s at about a 3-5 month age with the things she can do right now. So, I would love to hear about your children, and maybe understand where mine is headed with good things and bad things to come.
April
Sister’s baby just diagnosed with 1p36
I’m father to Giulia who is a lovely 3 years old baby and affected by 1p36 deletion syndrome.
My 7 y/o daughter has 1p36 deletion. I am interested in other families that have a child with the same deletion.
It is a family genetic condition which I have been looking seriously for answers for the past 5 years. I want to learn and share with others what I have learned on this quest. I want others ideas what has worked and what has not. I’d like to connect with others in the community.
Hi, my daughter was born on boxing day with this condition. I knew before she was born she had it and that it wasn’t going to be easy. She is now nearly 6 months old and weighs only 7lb 1oz after being born at 4lb 4oz. Has anyone else experienced this??
I recently went through the NIGHTMARE of my landlord selling my house , and was “found out” you might say .
I have a four year old son who has this chromosome deletion. I am looking to meet others for support and to provide support also.
I am interested in fragile x as my 3 yr old seems to have similar signs of fx and soon he has a chromosone test soon. And i want to chat to other people involved with fx.
I have a daughter Krystina who is now 4 and I just want to find out as much info as I can. Maybe it could help me when I am going thru things with my daughter and just the knowing that we are not the only ones.
hi there my name is toby i am 29years old. I have 3 great kids Katelyn 12, Chelsea 10 and Maddox 4! At 3 1/2 Maddox was diagnosed with 1p36. As you all know there is not much known about this in the medically field so I am happy chat with others who are in the same situation!