This is a wonderful video, Adam, and thanks for sharing your story, your secret story with this short film. We, too, have a son with fragile X. Scott is now 31 years old and lives independently with support. I hope the same with for your family members. We learn much from our children, and our family has learned a great deal about compassion and understanding from Scott.
My 2 year old son was just diagnosed with a full mutation, 530 repeats fully methylated. Your family is beautiful and like you, I hope to reach out to as many people about this syndrome. Knowledge is power. Thank you for posting this video. Let's find a cure!
Fragile X Syndrome is not a dominant/recessive issue(brown/blue eye). I am the carrier(mom) with the premutation, my daughter has the full mutation.
People with more than 200 CGG repeats have the full mutation. All males with the full mutation will experience significant symptoms. Some females with the full mutation will have symptoms of fragile X but in general, the severity is decreased.
I have met many females that display more symptoms than my son.
It's twice as common in boys because the dads Y can't overcompensate for the mothers X. Risk is decreased if father is carrier...increased if mother is carrier!
I think you should delete this comment because it just makes you look ignorant and you are giving people the wrong information. If your family is affected, you should see a geneticist.
My husband posted this video and I am so proud of him and his family. I have been blessed to be a part of this wonderful family. My nephew and nice are precious and wonderful children that have taught me as well as everyone else so much. They have taught us about communication, patience, compasion, and most of all love. If you view this video please give it a rating because my husband has submitted it to the fraxa organization in a contest to be the next fragile x video. Vote until Aug. 15.
I wanted to let people know that fragile x can be passed down through male carriers. I am a fragile x carrier and it was passed to me through my father. Men can only pass it to their daughters. If a man has a boy they never pass it to the boy because they boy receives they Y chromosome from their father. Girls receive the bad x , which is the only X men have to give their daughters. All 5 of my sisters are carriers because men never pass the full mutation.
This video is amazing and children with fxs are just such adorable people, I come from a family with a strong fxs history. but still to this day i strugle with the situation how it is passed on is it a case that if my mam is not a carrier that automaticly means i aint. if any one can help out on this as i am pregnant on my fourth and my relations that have kids with fxs it has been their 3rd and 4th child that has been affected please feel free to give me infomation.
In some cases, men can be carrier. It is unlikely that a man with full-mutation will find a partner but premutation men can find partner and be a carrier.
When premutation man passes on the gene to his daughters, it usually remains in pre-mutation state, but when a woman passes on the gene it can convert into full-mutation.
I believe chances of converting a premutation to full-mutation increases with age of the mother, that could be the reason for 3rd and 4th child to be affected.
Our geneticist believes Rachael may be an affected Fragile X premutation carrier due to X inactivation or lyonization. I haven't found much info on this. I welcome any information anyone may have.
Thank you. We discovered that we were a "fragile X family" while testing our daughter because of developmental delays. She is a premutation carrier (77 repeats) but has most the characteristics. This brings guilt to my mother in law who passed it to my husband. I will forward this to her. My video response is above. I wouldn't trade my Rachael for the world.
I am pretty sure that the defect cannot be passed on by men. Therefor, your husband couldn't be the carrier; you, the mother, would have to be. Anyways, does it really matter? Those kids have something special to bring to the world; they make us richer with their differences...
My child is suspected of having fragile x. They reconfirmed the dx of autism today. How much more can my little 5yr old take. I am having a pity party. The more I see of Fragile X- thats my child. MY CHILD> I am devasted. Your video is helping. I wanted to tell you. It only been 2 hrs since the appointment and you are helping me right now. Thank you Angela
Thank you for this incredible video. I am 38 years old, 11 weeks pregnant with my husband and my first child, and just found out I am in the "gray area" of Fragile X (count was 48).
This was shocking news as I've never even heard of it before so thank you for the encouragement. I too would never change the course, God has a purpose for everything and we know our child is His reward and gift to us. Thank you.
Beautifully done. My son is 15 and has fragile X. We also have a 13 yr son who does not. Your video expresses exactly how I feel. Good for you for putting this together.
It only took me 8 months, but finally. THANK YOU little brother!! You did a great job! I have to say, Fragile X Syndrome is due to a genetic boo boo, BUT by no means do I think my children are flawed and in NO WAY was he trying to convey that. He is the best uncle any kid could ask for! They are both doing very well, working very hard for each milestone they reach and loving life. FXS flipped our lives upside down, and thank goodness it did,a new perspective can change the world...for the BETTER
i like what you did with the video as of interveiws. I could suggest a bit more subtitles or titles only because it draws the veiwer's attention more to (sub)titles than speaking or narrating would. I do like how you put so many effects with the video. I can tell you worked hard on this. I also like the idea of opening with a man walking in silluette in a sunset, but i would have opened with an interveiw after titles. It's neat and i think you've opened peoples' eyes on to this
i love this video. I was looking for some info on Fragile X, because i'm taking care of a 10-year-old boy with fragile X. This was very beautiful and helpful. But it would be nice to see your everyday lives, and how you help your children.
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kevinkowens2 3 weeks ago
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kevinkowens2 3 weeks ago
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kevinkowens2 3 weeks ago
This is a wonderful video, Adam, and thanks for sharing your story, your secret story with this short film. We, too, have a son with fragile X. Scott is now 31 years old and lives independently with support. I hope the same with for your family members. We learn much from our children, and our family has learned a great deal about compassion and understanding from Scott.
gailheyman 2 months ago
My 2 year old son was just diagnosed with a full mutation, 530 repeats fully methylated. Your family is beautiful and like you, I hope to reach out to as many people about this syndrome. Knowledge is power. Thank you for posting this video. Let's find a cure!
messemer27 5 months ago
I stumbled on this video and it changed my life. Thank you for bringing this story to me it explained alot of my family history.
timthug1 7 months ago
My best friend Carmyn have Friagle X. I have a disability too.
birds16ful 10 months ago
These children in this video are beautiful.
mylovesofmylife 1 year ago
Thank you so much for sharing. It will help many people.
Grandmother of Emmet don't apologize or put a trip on this kid.
Children need freedom to just be and enjoy their childhoods unlabeled.
If everyone is tested then it most likely there are very few without some genetic flaw!
plhs987 1 year ago
My 13 year old son has Fragile X, his mom and sister are both carriers.
Midas1296 2 years ago
A beautiful treatment, incredible story of the strength of family and of purpose.
j3nnyj1ll 2 years ago
In order for a girl to be affected, the dad also has to be a carrier of the gene. This explains why its twice as more common in boys.
marlyonama 2 years ago
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325tori 2 years ago
she said that she was "A CARRIER" if that dad is not a carrier, than she wouldn't be affected. It's X-linked chomosomal genetics.
marlyonama 2 years ago
Fragile X Syndrome is not a dominant/recessive issue(brown/blue eye). I am the carrier(mom) with the premutation, my daughter has the full mutation.
People with more than 200 CGG repeats have the full mutation. All males with the full mutation will experience significant symptoms. Some females with the full mutation will have symptoms of fragile X but in general, the severity is decreased.
I have met many females that display more symptoms than my son.
whynotfxs 2 years ago
It's twice as common in boys because the dads Y can't overcompensate for the mothers X. Risk is decreased if father is carrier...increased if mother is carrier!
Genie4sho 2 years ago
You're completely right... I did not read your post properly.. sorry for my slowness. :)
Genie4sho 2 years ago
I think you should delete this comment because it just makes you look ignorant and you are giving people the wrong information. If your family is affected, you should see a geneticist.
yourtube2784 2 years ago
so full of love and support!
whynotfxs 2 years ago
My husband posted this video and I am so proud of him and his family. I have been blessed to be a part of this wonderful family. My nephew and nice are precious and wonderful children that have taught me as well as everyone else so much. They have taught us about communication, patience, compasion, and most of all love. If you view this video please give it a rating because my husband has submitted it to the fraxa organization in a contest to be the next fragile x video. Vote until Aug. 15.
325tori 2 years ago
I wanted to let people know that fragile x can be passed down through male carriers. I am a fragile x carrier and it was passed to me through my father. Men can only pass it to their daughters. If a man has a boy they never pass it to the boy because they boy receives they Y chromosome from their father. Girls receive the bad x , which is the only X men have to give their daughters. All 5 of my sisters are carriers because men never pass the full mutation.
sljewell33 2 years ago
This video is amazing and children with fxs are just such adorable people, I come from a family with a strong fxs history. but still to this day i strugle with the situation how it is passed on is it a case that if my mam is not a carrier that automaticly means i aint. if any one can help out on this as i am pregnant on my fourth and my relations that have kids with fxs it has been their 3rd and 4th child that has been affected please feel free to give me infomation.
josnig 3 years ago
In some cases, men can be carrier. It is unlikely that a man with full-mutation will find a partner but premutation men can find partner and be a carrier.
When premutation man passes on the gene to his daughters, it usually remains in pre-mutation state, but when a woman passes on the gene it can convert into full-mutation.
I believe chances of converting a premutation to full-mutation increases with age of the mother, that could be the reason for 3rd and 4th child to be affected.
tumtara 2 years ago
Our geneticist believes Rachael may be an affected Fragile X premutation carrier due to X inactivation or lyonization. I haven't found much info on this. I welcome any information anyone may have.
kellirae78 3 years ago
Thank you. We discovered that we were a "fragile X family" while testing our daughter because of developmental delays. She is a premutation carrier (77 repeats) but has most the characteristics. This brings guilt to my mother in law who passed it to my husband. I will forward this to her. My video response is above. I wouldn't trade my Rachael for the world.
kellirae78 3 years ago
I am pretty sure that the defect cannot be passed on by men. Therefor, your husband couldn't be the carrier; you, the mother, would have to be. Anyways, does it really matter? Those kids have something special to bring to the world; they make us richer with their differences...
evvofreak 3 years ago
Thank you, it is very touching.
I am a proud brother of two syndrom affected and lovely persons.
Watch "Barmat Brothers" here in YouTube, although the video is in Hebrew, anyone knowing the life with these people can get the message...
barmat67 3 years ago
My child is suspected of having fragile x. They reconfirmed the dx of autism today. How much more can my little 5yr old take. I am having a pity party. The more I see of Fragile X- thats my child. MY CHILD> I am devasted. Your video is helping. I wanted to tell you. It only been 2 hrs since the appointment and you are helping me right now. Thank you Angela
adreamdeferred 3 years ago
Thank you for this incredible video. I am 38 years old, 11 weeks pregnant with my husband and my first child, and just found out I am in the "gray area" of Fragile X (count was 48).
This was shocking news as I've never even heard of it before so thank you for the encouragement. I too would never change the course, God has a purpose for everything and we know our child is His reward and gift to us. Thank you.
pschristina 3 years ago
Beautifully done. My son is 15 and has fragile X. We also have a 13 yr son who does not. Your video expresses exactly how I feel. Good for you for putting this together.
lynninator30 3 years ago
Beautiful!!
MiralukaNaima 3 years ago
Loved it!
Marilyn Therrell
melise02 3 years ago
It's important to get the word out about fragile x syndrome, thanks.
livingwithfragilex 3 years ago
This is very helpful. I am going to use some info from this for a biology project on fragile X.
0motion 3 years ago
this movie was sad but thank you
MistressDie 3 years ago
Beautiful video......brought tears to my eyes...
walnut54 3 years ago
It only took me 8 months, but finally. THANK YOU little brother!! You did a great job! I have to say, Fragile X Syndrome is due to a genetic boo boo, BUT by no means do I think my children are flawed and in NO WAY was he trying to convey that. He is the best uncle any kid could ask for! They are both doing very well, working very hard for each milestone they reach and loving life. FXS flipped our lives upside down, and thank goodness it did,a new perspective can change the world...for the BETTER
whynotfxs 3 years ago 2
i like what you did with the video as of interveiws. I could suggest a bit more subtitles or titles only because it draws the veiwer's attention more to (sub)titles than speaking or narrating would. I do like how you put so many effects with the video. I can tell you worked hard on this. I also like the idea of opening with a man walking in silluette in a sunset, but i would have opened with an interveiw after titles. It's neat and i think you've opened peoples' eyes on to this
ODibbyO 4 years ago 2
theres nothing wrong with being disabled, its just part of diveristy ;-) i am disabled and perfect
Shannonbarnesdr1 4 years ago 6
what's your problem?
bclagnese 1 year ago
@Shannonbarnesdr1 I'd prefer the term 'enabled'. ;')
DarkPortalRogue 11 months ago
I have a 6 year old that has fragilex it really touches home. I would not give it up for anything.
melindam1970 4 years ago 3
i love this video. I was looking for some info on Fragile X, because i'm taking care of a 10-year-old boy with fragile X. This was very beautiful and helpful. But it would be nice to see your everyday lives, and how you help your children.
alsedenmark 4 years ago