My husband and I adopted 6 kids and of the 6 kids 3 of them have chromosome 16 deletion. it effects each one diferently. the 15 year old is very slow at school and seems hungry all the time. the 7 and 8 year old both have a lot of the same problem your son has. With therapy and constant care they are doing alot better then when we first got them. I was told Josh the 7 year old wouldnt walk or talk, he is now communicating and walking and some what can run but not for long.
Thanks for sharing your sweet boy with us. My grandson is undergoing chromosome testing, the doctor thinks he has a deletion too. He is missing tooth enamel too, and just walked at 23 months and has severe sensory issues. Like Ace he is so loving and sweet too. He works with early intervention program with therapists and they are great. A huge problem is choking, it is so scary. Ace is so precious.
My daughter has the 16p deletion. I have a group on Facebook if any of you would like to join and find out more about it and meet other families please request to join xxx it's called 16p 11.2 we are family
I have a child with a large deletion on chromosome 1q21, she is only three months old and has spent more time in the hospital than out. She just had a fundoplicaiton and a g-tube placed today, things from this deletion really sound like her. She is very behind developmentally as she has hypotonia and very little head control. Things just aren't right with her, and as a parent its hard because you dont know what to expect, but you just need to fight for your child.
Everything in this vid sounds like my 15month old son. He suffers frm chromosome deletion 6q26 deletions from 6q27 & I have no idea wht 2expect of his future jst hav2take 1day @a time. He has scoliosis 2the spine, Xtra rib bone, he can't sit, stand, walk or crawl, he has low muscle tone, showing signs of seizures & has flat head syndrome, abnormalities thruout his body, aggressive, but vry loving. He has feeding problms, sleep problms, the list continues. all the best
My daughter has deletion of 16q22.3-q24.1. She is 3 and exhibits almost all of the behaviours you have documented for Ace. Have you found out exactly which bands are deleted on the q arm for Ace?
with this microarray abnormality has recently been implicated in individuals with a neuropsychiatric phenotype. Seizure disorders have been reported as have abnormalities in learning and various neuropsych symptoms such as depression.
I have a 9 year old who has a deletion on chromosome 16p12.2->16p12.1.
I've just found out 4 months ago. My son has learning disability, speech and language disorder and global developmental delays.
After finding out my son's deletion his genetic asked for his father and I to get test. The deletion wasn't observed in my blood but it was observed in his father. His father has the same deletion. His father has learning disability, serious seizure disorder and depression.
We've just found out my daughter has deletion's of chromosome 8 and 16 (was dx with cancer at age 3). I came across your story after researching a bit on the net. We're currently going through more testing to find out more. Wishing your little man all the best. Our daughter is 11, but intellectually on an 8yo level.
our 3 year old has duplication of chromo 16 and often has odd movements of his eyes.. the neuro says the pattern of eye movement is not typical of seizure but they are not ruling it out.. they are also considering movement disorder. i would appreciate any reply regarding what "bouncing eyes" look like and triggers. it is amazing to hear other families experiencing the same thing. does anyone have a you tube vid of their childs bouncing eyes ? (with chromo 16 issue)
I cannot help but notice the similarities in what you have described and Autism. Recent studies seem to show that deletion of 16 is related to Autism. Has anyone ever given Ace that diagnosis? The inability to be soothed, the hypersensitivity to some sounds and textures, non-verbal communication, etc. - all are indicative of Autism. Of course, they are also indicative of other issues, but that's what first came to my mind.
My little sister aged 2 got a letter diagnosing this and my mum is really worried if someone could give me any information it would be really appreciated.
hi, i just found out my daughter has a deletion in chromosome 16. I am very confused about all this, the doctors arent giving me much information on it. Please, someone who is going through the same thing I am, write me, my email is melaniexothumper@yahoo.com My baby is a little over 2 weeks old and has alot of issues that is bothersome and its really worrying me. She is in a very good hospital but I still wonder if the doctors are hiding something from me. Any info would be so helpful. TY.
i just got told my daughter has a deletion in chromosome 16...any info on this would be so helpful..please..i am so confused about all this and need to know what to expect. thank you!! please email me at melaniexothumper@yahoo.com
i just got told my daughter has a deletion in chromosome 16...any info on this would be so helpful..please..i am so confused about all this and need to know what to expect. thank you!!
im glad i watched this video my son had micoarray testing and has issues with his chromosome 12 as well as 16. it worries me quite a bit and they dont wany
I am sitting here dumbstruck. My grandson was just determined to have Chromosome 5 and 16 deletions. Everyone has been so focused on #5 as it is so large and has never been documented before. But as I watched this video I know that every issue my grandson is having is exactly what you have documented here, down to textures, sounds, bouncing eyes, sleep patterns, and visually I notice they have extremely similar hand shapes - slight spaces between fingers #3 and 4. Do I laugh or cry now?
My son is 3 yrs and has deletion 16q21. Our doc has not found another child with the same deletion. He has similarities to all of what you experience with Ace, extreme sensory issues to sight, touch & sound causing him to gag/vomit, particularly rain and soaps, high pitch music etc. He has limited speech, mimics well though! I have to fight to get the help but we are getting there. I'm with him and that helps, he has my complete attention during the day and I know it's making a difference.
My son is 3 1/2 and has this condition. I was told by our geneticist that only one other boy in Sweden has this condition. My son has the prominent forehead like your son. Had failure to thrive when first born. His eyes were crossed and are extremely short sighted andhe is passing each milestone about a year after the average child. Other than that he's pretty normal and low maintenance. Would love to hear from mothers who have a child with the same condition. helenroxureworld@hotmail.com
Very interesting to see someone with the same deletion as my son! My son did have trouble with many of the same things and many different ones as well. He has trouble talking. Learned how to walk at 18 months and never crawled. Had 6 surgeries. (cleft palate, ear tubes 3times, hypospadias, and tongue tie) He's now 2 1/2 but doing very well considering! He also has a very big head. You can look up my videos of him learning very early though. He's under "Ethan Nehemiah"
my son has 15q deletion, he is the only child with this condition, his condition is called de novo as me or his dad dont have this condition, i can totally relate to you, please get in contact s.jhill@live.com
I watched your video earlier and I applaud you for making it. My daughter was diagnosed with Chromosome 16p11.2 deletion syndrome. Like you, I've been doing a lot of research to find out more about this condition. Keep up the good work!
My son is 8 years old and he has being diagnosed with Chromosome 16 Inversion, (micro delition or duplication testing is in process). However, my son has many similarities with your son. Chromosome abnormalities will always affect a person in different ways, so if someone tells you that everything will be "normal" it is wrong. Unfortunately, there is not enough information about these anomalies, but our job as parents is keep searching. Good luck, and your baby is an Angel.
I just watched this video it broke my heart. My daughter was also diagnosed with chromosome 16 deletion and I was told that this deletion most likely will not affect her but watching your video made me realize that she has very similar symtomps. is there any way i could email you or talk to you about this matter? I would really like to find out some details i dont trust the doctors they all say everything will be ok but i can see that my baby is struggling and i cant do anything to help her
My daughter is 18onths old and has 16q deletion. She does not even sit yet, or eat. she is G tube fed. I loved your video cute boy. Even though my daughter is a lot younger you may contact me any time.
I have worked with kids who are non verbal around his age. I have taught some to use picture communications where they have a book w/ pictures in it that they can take out and show us what they need or want... it has moved mountains for several kids I know... behaviors can be elevated because they can't express their needs, but once they can start to communicate.. oh my do they come out of their shells. it is awesome! Good Luck. I wish I could work with your son.
Ace you are such a handsome boy. I have SVT too. Its not fun ah precious but wuth your Mommy and family beside you I am sure you can cocure anything. You area Angel on earth sweety
There is so much I would like to chat about there is no room here to do so. Our children are individual and special and I am sure that like me, you would never change him xx
hi,thank you so much for sharing this video with us, Ace is a gorgeous little boy and if he is anything like my little girl, he will be very cheeky too xx
My daughter is just 2 years old and she also has 16 deletion, he deletion is on the q (long) arm. Jessica is slightly different as she is a mosaic which means that not every cell in her body is affected by the syndrome but we still have no idea how she will develop in the future.
Like Ace, Jess had problems with her head but she wore a corrective helmet for about 1 year which really helped. She has never said a word and it breaks my heart to think she may never say mummy.
The Dr's pretty much wrote her off at birth and said she would never do things a 'normal' child would but she keeps proving them all wrong, in fact very recently she took her 1st steps.
Alot of that is reminescant of Jason without the low immunity issues. Jason operates at about a 7 year old level at age 19. For us the worst time is when the puberty kicked in.
Jason wasn't diagnosed with the deltion until he was 16, since he was born on a military hospitable the genetics test wasn't standard there and all our other doctors after I got out assumed it would have been done. I pushed him hard thinking he could catch up for a long long time, Delayed Development is misleading.
My husband and I adopted 6 kids and of the 6 kids 3 of them have chromosome 16 deletion. it effects each one diferently. the 15 year old is very slow at school and seems hungry all the time. the 7 and 8 year old both have a lot of the same problem your son has. With therapy and constant care they are doing alot better then when we first got them. I was told Josh the 7 year old wouldnt walk or talk, he is now communicating and walking and some what can run but not for long.
shadowcraig2 4 weeks ago
He is a very precious boy, you did a wonderful job on this video
grandmasbabees 1 month ago
Very touching. My daughter has 16p13.11 deletion.
sampson69cs 2 months ago
Thanks for sharing your sweet boy with us. My grandson is undergoing chromosome testing, the doctor thinks he has a deletion too. He is missing tooth enamel too, and just walked at 23 months and has severe sensory issues. Like Ace he is so loving and sweet too. He works with early intervention program with therapists and they are great. A huge problem is choking, it is so scary. Ace is so precious.
grandmasbabees 2 months ago
My daughter has the 16p deletion. I have a group on Facebook if any of you would like to join and find out more about it and meet other families please request to join xxx it's called 16p 11.2 we are family
trudybo 4 months ago
I have a child with a large deletion on chromosome 1q21, she is only three months old and has spent more time in the hospital than out. She just had a fundoplicaiton and a g-tube placed today, things from this deletion really sound like her. She is very behind developmentally as she has hypotonia and very little head control. Things just aren't right with her, and as a parent its hard because you dont know what to expect, but you just need to fight for your child.
hakesl74 4 months ago
Everything in this vid sounds like my 15month old son. He suffers frm chromosome deletion 6q26 deletions from 6q27 & I have no idea wht 2expect of his future jst hav2take 1day @a time. He has scoliosis 2the spine, Xtra rib bone, he can't sit, stand, walk or crawl, he has low muscle tone, showing signs of seizures & has flat head syndrome, abnormalities thruout his body, aggressive, but vry loving. He has feeding problms, sleep problms, the list continues. all the best
babymumma89 6 months ago
My daughter has deletion of 16q22.3-q24.1. She is 3 and exhibits almost all of the behaviours you have documented for Ace. Have you found out exactly which bands are deleted on the q arm for Ace?
blamesociety123 7 months ago
with this microarray abnormality has recently been implicated in individuals with a neuropsychiatric phenotype. Seizure disorders have been reported as have abnormalities in learning and various neuropsych symptoms such as depression.
kaykue83 8 months ago
I have a 9 year old who has a deletion on chromosome 16p12.2->16p12.1.
I've just found out 4 months ago. My son has learning disability, speech and language disorder and global developmental delays.
After finding out my son's deletion his genetic asked for his father and I to get test. The deletion wasn't observed in my blood but it was observed in his father. His father has the same deletion. His father has learning disability, serious seizure disorder and depression.
kaykue83 8 months ago
DAMN, ACE'S MOM HAS HUGE TITS!
minicopilot 9 months ago
We've just found out my daughter has deletion's of chromosome 8 and 16 (was dx with cancer at age 3). I came across your story after researching a bit on the net. We're currently going through more testing to find out more. Wishing your little man all the best. Our daughter is 11, but intellectually on an 8yo level.
vegemite1971 9 months ago
our 3 year old has duplication of chromo 16 and often has odd movements of his eyes.. the neuro says the pattern of eye movement is not typical of seizure but they are not ruling it out.. they are also considering movement disorder. i would appreciate any reply regarding what "bouncing eyes" look like and triggers. it is amazing to hear other families experiencing the same thing. does anyone have a you tube vid of their childs bouncing eyes ? (with chromo 16 issue)
adamleah 1 year ago
we have duplications of 16p11.2-16q12.1 and i am so grateful to hear your story..
adamleah 1 year ago
I cannot help but notice the similarities in what you have described and Autism. Recent studies seem to show that deletion of 16 is related to Autism. Has anyone ever given Ace that diagnosis? The inability to be soothed, the hypersensitivity to some sounds and textures, non-verbal communication, etc. - all are indicative of Autism. Of course, they are also indicative of other issues, but that's what first came to my mind.
kezhlars 1 year ago
My little sister aged 2 got a letter diagnosing this and my mum is really worried if someone could give me any information it would be really appreciated.
kittykit92 1 year ago
The video was very helpful..but i still have alot of questions. So, if anyone has the chance, please write me. God Bless your son :) *Melanie*
melanietaws 1 year ago
hi, i just found out my daughter has a deletion in chromosome 16. I am very confused about all this, the doctors arent giving me much information on it. Please, someone who is going through the same thing I am, write me, my email is melaniexothumper@yahoo.com My baby is a little over 2 weeks old and has alot of issues that is bothersome and its really worrying me. She is in a very good hospital but I still wonder if the doctors are hiding something from me. Any info would be so helpful. TY.
melanietaws 1 year ago
Comment removed
melanietaws 1 year ago
i just got told my daughter has a deletion in chromosome 16...any info on this would be so helpful..please..i am so confused about all this and need to know what to expect. thank you!! please email me at melaniexothumper@yahoo.com
melanietaws 1 year ago
i just got told my daughter has a deletion in chromosome 16...any info on this would be so helpful..please..i am so confused about all this and need to know what to expect. thank you!!
melanietaws 1 year ago
im glad i watched this video my son had micoarray testing and has issues with his chromosome 12 as well as 16. it worries me quite a bit and they dont wany
oxxrachaelxox 1 year ago
I am sitting here dumbstruck. My grandson was just determined to have Chromosome 5 and 16 deletions. Everyone has been so focused on #5 as it is so large and has never been documented before. But as I watched this video I know that every issue my grandson is having is exactly what you have documented here, down to textures, sounds, bouncing eyes, sleep patterns, and visually I notice they have extremely similar hand shapes - slight spaces between fingers #3 and 4. Do I laugh or cry now?
nevergivinup318 1 year ago
My son is 3 yrs and has deletion 16q21. Our doc has not found another child with the same deletion. He has similarities to all of what you experience with Ace, extreme sensory issues to sight, touch & sound causing him to gag/vomit, particularly rain and soaps, high pitch music etc. He has limited speech, mimics well though! I have to fight to get the help but we are getting there. I'm with him and that helps, he has my complete attention during the day and I know it's making a difference.
Scudubby 1 year ago
My son is 3 1/2 and has this condition. I was told by our geneticist that only one other boy in Sweden has this condition. My son has the prominent forehead like your son. Had failure to thrive when first born. His eyes were crossed and are extremely short sighted andhe is passing each milestone about a year after the average child. Other than that he's pretty normal and low maintenance. Would love to hear from mothers who have a child with the same condition. helenroxureworld@hotmail.com
dreamqueen166 1 year ago
Very interesting to see someone with the same deletion as my son! My son did have trouble with many of the same things and many different ones as well. He has trouble talking. Learned how to walk at 18 months and never crawled. Had 6 surgeries. (cleft palate, ear tubes 3times, hypospadias, and tongue tie) He's now 2 1/2 but doing very well considering! He also has a very big head. You can look up my videos of him learning very early though. He's under "Ethan Nehemiah"
mommasince07 1 year ago
my son has 15q deletion, he is the only child with this condition, his condition is called de novo as me or his dad dont have this condition, i can totally relate to you, please get in contact s.jhill@live.com
sarahjanehill1 1 year ago
Feedback? You don't sound like you need feedback. You sound like you have a tight grip on the situation.
Lovely child you have. Best of luck to the both of you.
Ptrrrrrrrr 1 year ago
I watched your video earlier and I applaud you for making it. My daughter was diagnosed with Chromosome 16p11.2 deletion syndrome. Like you, I've been doing a lot of research to find out more about this condition. Keep up the good work!
BuckeyeMom79 2 years ago
kernicterus, read it in internet!!!
constantinej1 2 years ago
Many of your sons symptoms sound similar to what we find in Autistic children. I wonder is you have used similar techniques for Ace?
akggsparks 2 years ago
My son is 8 years old and he has being diagnosed with Chromosome 16 Inversion, (micro delition or duplication testing is in process). However, my son has many similarities with your son. Chromosome abnormalities will always affect a person in different ways, so if someone tells you that everything will be "normal" it is wrong. Unfortunately, there is not enough information about these anomalies, but our job as parents is keep searching. Good luck, and your baby is an Angel.
mariantapia7 2 years ago
I just watched this video it broke my heart. My daughter was also diagnosed with chromosome 16 deletion and I was told that this deletion most likely will not affect her but watching your video made me realize that she has very similar symtomps. is there any way i could email you or talk to you about this matter? I would really like to find out some details i dont trust the doctors they all say everything will be ok but i can see that my baby is struggling and i cant do anything to help her
msjustsimple 2 years ago
My daughter is 18onths old and has 16q deletion. She does not even sit yet, or eat. she is G tube fed. I loved your video cute boy. Even though my daughter is a lot younger you may contact me any time.
dpanderson72 2 years ago
I have worked with kids who are non verbal around his age. I have taught some to use picture communications where they have a book w/ pictures in it that they can take out and show us what they need or want... it has moved mountains for several kids I know... behaviors can be elevated because they can't express their needs, but once they can start to communicate.. oh my do they come out of their shells. it is awesome! Good Luck. I wish I could work with your son.
hazeleyyes 2 years ago
Ace you are such a handsome boy. I have SVT too. Its not fun ah precious but wuth your Mommy and family beside you I am sure you can cocure anything. You area Angel on earth sweety
God Bless
Kalena
corky4343 2 years ago
He is a beautiful child and you must be a very devoted and loving mother as it is a lovely tribute
magiccatsmother 2 years ago
There is so much I would like to chat about there is no room here to do so. Our children are individual and special and I am sure that like me, you would never change him xx
Take care xx
clairelouxxx 2 years ago
hi,thank you so much for sharing this video with us, Ace is a gorgeous little boy and if he is anything like my little girl, he will be very cheeky too xx
My daughter is just 2 years old and she also has 16 deletion, he deletion is on the q (long) arm. Jessica is slightly different as she is a mosaic which means that not every cell in her body is affected by the syndrome but we still have no idea how she will develop in the future.
clairelouxxx 2 years ago
Like Ace, Jess had problems with her head but she wore a corrective helmet for about 1 year which really helped. She has never said a word and it breaks my heart to think she may never say mummy.
The Dr's pretty much wrote her off at birth and said she would never do things a 'normal' child would but she keeps proving them all wrong, in fact very recently she took her 1st steps.
clairelouxxx 2 years ago
there is no name because he is the only one with this exact deletion. chromosome 16 deletions are extremely rare.
chromosome16disorder 2 years ago
What is the names of Ace disabilty?
birds16ful 2 years ago
Alot of that is reminescant of Jason without the low immunity issues. Jason operates at about a 7 year old level at age 19. For us the worst time is when the puberty kicked in.
Jason wasn't diagnosed with the deltion until he was 16, since he was born on a military hospitable the genetics test wasn't standard there and all our other doctors after I got out assumed it would have been done. I pushed him hard thinking he could catch up for a long long time, Delayed Development is misleading.
idahojay 2 years ago
mahh baby kuzz is so0 cute and so0 clever i love u always acey boy xoxxoxox
caitlin and evey1
loviingSTAN 2 years ago
This is very touching video
im alisons neigbour and i looked after him befor with the kids
he is soo cutee and clever
loviingSTAN 2 years ago
thanks :-)
chromosome16disorder 2 years ago
thanxx taylo00or lol
loviingSTAN 2 years ago