I know this video is older and you might not see this but you have know idea how much comfort I get in finding this. My son is almost 2 and we found out when he just turned 1 that he has a chromosome 13q12.11 13q12.12 deletion. He has almost all of the things you mentioned in this video. It’s been so hard to feel like we are completely alone in this because we were basically told by genetics “I don’t know, we have to wait and see.” I hope all is well with your baby boy and yourself. Just know your video brought me some comfort. Thank you.
Im glad! Yes it feels so lonely! I get it! He is now 7 and in school. School is helping him progress so much! He’s trying to say words and understands almost everything we say to him ! He surprises us everyday with new things !
My son also has 13q chromosome deletion, he showed genital abnormalities from when I was pregnant. He was also very low weight 4.9lbs when he was born and had a blockage in his small intestine so he needed surgery. While in the NICU they found out the deletion is the reason for all his issues. I didn't find out until I had an appointment with the genetics when he was 7 months. She referred me to a free government Early start program in which they been helping his development so much. He sees a physical therapist, because he still doesn't craw on all fours only army crawl. He didnt sit down until he was 10 months, he only eats puree food because he feels like his shoking. The pediatrician also referred him to several specialists doctors including ophthalmology, swallowing doctor, craniologist, urologist and cardiologist. I feel his doing great he learns fast so I'm hoping his development improves as he grows.
Awww yes Angelo is in a bunch of therapies and sees a podiatrist and endocrinologist and a few others. He’s about to be 7. Since he started school he has been progressing! Since he started school he has been trying to say words! He doesn’t say them clearly but he is trying. He understands so much! We ask him to do tasks and he does. We will challenge him just to see if he understand and he always surprises us when he does!
My son has Mosaic Trisomy 12. He was diagnosed at day two. It didn’t really help us though... at the time there were only 7 documented cases. Also du3 to the mosaic they would have to have the exact same cells with the triple 12 chromosome. Parker didn’t walk until almost 5. I can tell you over the years we’ve had lots of ups & downs. He is now 18 years old & the love of our lives. Have you joined the group called, Unique? It’s based out of the UK & is for people with rare chromosome disorders.
He’s the cutest , my little Brother has Autisim and it takes a lot of patience I take care of kids like them people see them different but honestly children like your son are the ones with the biggest hearts ❤️
I was going through the same thing about 10 years ago. My son was diagnosed with 13q 21.33-31.1. I was told that we where the only one here in Sweden with 13q
My daughter was just diagnosed with missing chromosome 19 . We are going to find out more when we have a meeting with them. But she is 10 months now and just finding out what she has . I know exactly what your going my daughter still needs help with her head. She hasn’t started sitting or crawling yet , but she’s trying . I’m also looking for other moms out there that are going through the same thing ! I would love talk ❤️
Hi, I know this is an older video but I would definitely love to see updates. How was your son doing now? My daughter has 13.3 Q deletion she is almost 2 now is not walking or talking either. I would love to see how your story turned out.
Hello! My son is almost 7 now. He’s in a special education class. He understands so much! He surprises us everyday. He is now saying words! He doesn’t say words clearly but he tries! Or atleast tried to sound it out. I think. Him being in school is helping him progress so much! He has been coming home doing new things since he started!
Hello! My son is almost 7 now. He’s in a special education class. He understands so much! He surprises us everyday. He is now saying words! He doesn’t say words clearly but he tries! Or atleast tried to sound it out. I think. Him being in school is helping him progress so much! He has been coming home doing new things since he started!
My son has 13q 12.2-34 mosaic deletion. He’s a very happy 7 year old. Having kids like this is hard, but amazing at the same time. The best thing my son has going for him is a infinite supply of love and joy! Keep your head up, you’ll probably find the specialist googling stuff too!
I know this video is older and you might not see this but you have know idea how much comfort I get in finding this. My son is almost 2 and we found out when he just turned 1 that he has a chromosome 13q12.11 13q12.12 deletion. He has almost all of the things you mentioned in this video. It’s been so hard to feel like we are completely alone in this because we were basically told by genetics “I don’t know, we have to wait and see.” I hope all is well with your baby boy and yourself. Just know your video brought me some comfort. Thank you.
Im glad! Yes it feels so lonely! I get it! He is now 7 and in school. School is helping him progress so much! He’s trying to say words and understands almost everything we say to him ! He surprises us everyday with new things !
@@lorienalopez4642 that’s amazing! I’m glad he’s doing so well. ❤️
My son also has 13q chromosome deletion, he showed genital abnormalities from when I was pregnant. He was also very low weight 4.9lbs when he was born and had a blockage in his small intestine so he needed surgery. While in the NICU they found out the deletion is the reason for all his issues. I didn't find out until I had an appointment with the genetics when he was 7 months. She referred me to a free government Early start program in which they been helping his development so much. He sees a physical therapist, because he still doesn't craw on all fours only army crawl. He didnt sit down until he was 10 months, he only eats puree food because he feels like his shoking. The pediatrician also referred him to several specialists doctors including ophthalmology, swallowing doctor, craniologist, urologist and cardiologist. I feel his doing great he learns fast so I'm hoping his development improves as he grows.
Awww yes Angelo is in a bunch of therapies and sees a podiatrist and endocrinologist and a few others. He’s about to be 7. Since he started school he has been progressing! Since he started school he has been trying to say words! He doesn’t say them clearly but he is trying. He understands so much! We ask him to do tasks and he does. We will challenge him just to see if he understand and he always surprises us when he does!
My son has Mosaic Trisomy 12. He was diagnosed at day two. It didn’t really help us though... at the time there were only 7 documented cases. Also du3 to the mosaic they would have to have the exact same cells with the triple 12 chromosome. Parker didn’t walk until almost 5. I can tell you over the years we’ve had lots of ups & downs. He is now 18 years old & the love of our lives. Have you joined the group called, Unique? It’s based out of the UK & is for people with rare chromosome disorders.
He’s the cutest , my little Brother has Autisim and it takes a lot of patience I take care of kids like them people see them different but honestly children like your son are the ones with the biggest hearts ❤️
I was going through the same thing about 10 years ago. My son was diagnosed with 13q 21.33-31.1. I was told that we where the only one here in Sweden with 13q
My daughter was just diagnosed with missing chromosome 19 . We are going to find out more when we have a meeting with them. But she is 10 months now and just finding out what she has . I know exactly what your going my daughter still needs help with her head. She hasn’t started sitting or crawling yet , but she’s trying . I’m also looking for other moms out there that are going through the same thing ! I would love talk ❤️
Hi, I know this is an older video but I would definitely love to see updates. How was your son doing now? My daughter has 13.3 Q deletion she is almost 2 now is not walking or talking either. I would love to see how your story turned out.
Hello! My son is almost 7 now. He’s in a special education class. He understands so much! He surprises us everyday. He is now saying words! He doesn’t say words clearly but he tries! Or atleast tried to sound it out. I think. Him being in school is helping him progress so much! He has been coming home doing new things since he started!
Bro my sistas really out here 😖💜
HEHEEHHEHE LOVE YOUUUUUU
I felt the same way and I still get emotional at times..
Michael Lee it’s hard but you have to be strong for them💙
My baby has 13q 21.31-31.1 deletion
Thank you
My daughter has just been diagnosed. How is your son doing now that he is older?
Hello! My son is almost 7 now. He’s in a special education class. He understands so much! He surprises us everyday. He is now saying words! He doesn’t say words clearly but he tries! Or atleast tried to sound it out. I think. Him being in school is helping him progress so much! He has been coming home doing new things since he started!
My girl was diagnosed with something called 2 q 13 microdeletion... so i think it's similar to your child but yeh it is so rare 🥺
❤❤
My son has 13q 12.2-34 mosaic deletion.
He’s a very happy 7 year old. Having kids like this is hard, but amazing at the same time. The best thing my son has going for him is a infinite supply of love and joy! Keep your head up, you’ll probably find the specialist googling stuff too!
Yes you’re right unconditional love and support is all they need 💙