Fragile X - Hitting the Mark

[kclappFRAXA]

That is "Only Time" by Enya. Good luck with your video!

[shawnaburden]

If anyone knows the name of the song that starts around 5.30 please let me know, I'm doing a video for my brother with Fragile x

[keezydadon]

I have Fragile X Syndrome.

[tomiku82]

Parent have this misconception that what they think is the best for their child is really the best. Isn't it just important to give your best dear parents and let your children be who they are in accepting them being themselves? Thanks.

[Hottopicjunkie1]

2 diseases that people should know more about

Fragile X- Very unknown

TS Tourettes syndrome- I have this, it sucks i hop randomly and it takes energy out of me and not many people know you dont just swear

[musicgirl999]

I have a cousin with fragile x who is 23 i think. He's actually my moms cousins son. So I guess we are more so distant cousins. I've only met him once when I was little.

[edur89]

FRAXA Research Foundation founders are so dedicated to funding a potential cure for Fragile X. They work diligently to raise funds & to educate the public. Go FRAXA RESEARCH!

[tristracie]

Great Video. Our son Tristan will be eleven in January..Katie was the first person I was given as a contact. Best Wishes and We're with you in the fight ...love Mrs. and Dr. Georgiadis and Tristan COLORADO

[tiaaiden]

thank you for this vidio my son has Autism and is being tested for fragiel x on the 6th of this mo i didnt even know that fragiel x exsisted untill they told me it would be a good idea to test because im having a girl and they said it could help us be better prepaird for this birth

[pschristina]

Me too! I just found out that I carry (grey zone) Fragile X as well. Girls have a better handle because of their XX where boys have XY. Jenny McCarthy's book, "Louder than Words," that (minus the Rated R language in places), is how she helped her son recover from vaccines, offers info to new schedule for them, OCD, diet, etc. and has resources at the end of the book. We are 8 months preg (boy? girl?) but praying to God for wisdom (James 1:5) on how to do our best to avoid adding to the problem.

[edur89]

Great video. Katie Clapp & Mike Tranfaglia work so hard to raise funds for a cure for Fragile X and also to educate folks regarding medical advances in Fragile X. Keep up the great work! Go FRAXA Research!

[melise02]

Hi Katy...I loved the video, and so felt the pain in your heart when you are talking. You and Mike are amazing parents!

Marilyn Therrell

[Dannielledannielle]

This video explained every feeling I had on a nine yr journey to finding out my daughter has Fragile X in a pre~mutation and Full mutation. I'm sitting here in tears because I know now, I am not alone. Thank you!

[livingwithfragilex]

It's important to get the word out about fragile x syndrome, thanks.

[editmonkeyeditdotcom]

Thanks for the video!

[annacoh]

thank you for that video it was fantastic

i have a brother with fragile x and i don't know many other people who are going through the same thing i live in australia and it is not very widely known as it is in america. so my goal is to educate as many people as i can about it. the drug would be a miracle but at the same time i dont want to give my hopes up on it.

thank you thu

[DangerMouse13405]

I'm afraid that I may have Fragile X. That scares me very much.

[RabidGoth]

Thank you for this video.

My uncle has fragile x and ive learned to live with it without learning what it really was.

this was very insightful for me and i support your work wholeheartedly.

[caitlina47]

Thank you for this... Iam a teacher and one of my most favorite students has fragile "x"...he will soon be residential and that will truely break my heart....I have grown a bond with him that many people wouldn't attempt to do and I really don't know how to handle this, it is not in my control

[TastiBUTTERFLY]

Thank you for this! I have recently starting trying to get some insight on what fragile x is. My soon to be husband has 2 sons from a previous relationship. We just found out that they have fragile x. I of course am interested to know if it is my fiance who is the carrier for this syndrome. Can he be tested for this? And what kind of costs are we looking at to get this done. I feel I must know, so I we can work on a family together. Thanks again!

[kclappFRAXA]

You are lucky in this case, because your future husband's sons could only have inherited fragile X from their mother. Fragile X is caused by a gene on the X chromosome, and since fathers pass their Y chromosome to sons, they cannot pass the syndrome to their sons. If a man is a carrier, all his daughters will also be carriers.

I hope this helps. It is a bit confusing tracing it through the generations.

[DragonFly122]

I know I am going to get a bunch of nasty comments and thumbs down but I believe that using "developmental delay" as a subsitute for "mental retardation/mental delay" is conterproductive and unhelpful (in your video, you mention that fragile x causes developmental delay), I know plenty of people who were labeled "developmental delay" and are NOT MR.

Peace.(I'm not trying to sound like that loser NicholasKen)

[DragonFly122]

BTW, great video : )

[kclappFRAXA]

You have a good point, but quite a lot of people who have full blown fragile X syndrome do not have MR (defined as an IQ of 70 or below). They have challenges but not MR. And, to muddy the terminology waters even further, the official government-sanctioned term is now "intellectual disability" rather than "mental retardation" or "mental impairment". We'll have to change all our brochures again!

[Taredaa]

i am french, and i need this video because i study this disease... But i have to translate it first. And I'm having some problems.

Could you please tell me what Kate Fullam says when she 's speaking of the pediatrician and the finger thing? (1'22'') (when the pedetrician said 'dont worry about it')

Thank you :)

[Jennyanyrats]

She says, "I used to bring up to the pediatrician, he doesn't have that nice, tight baby 'death grip' on your finger when they hold on and they start to interact with you a little bit. The pediatrician would always say, 'Don't worry about it.'"

[ProfessorLory]

I am reading the book "Dear Megan," which inspired me to visit the FRAXA website. The video on YouTube brings to life the children and families who are in the book. Thank you.

[pa77vargas]

My almost 15 year old daughter has the pre-mutation for fragile X, and has a lot of the learning disabilities (she is in a regular 9th grade w/ a para) and the obsessivness. She is also very sweet and loving, but it is very difficult for her to make friends. People don't realize by looking at her that there is something wrong w/ her which almost makes it more difficult for her because they just think she is weird. Thanks for bringing this syndrome out for people to see.

[DragonFly122]

pa77vargas, what's a para?

[cure4jason]

I have a 15 year old Autistic son named Jason, and he was diagnosed as Autistic at the age of 3. Where can I have my son tested to see if his problem is Fragile X? Thanks in advance for any help...

[kclappFRAXA]

Any doctor can order a blood test for fragile X syndrome. The test is a very reliable DNA test. It can take a few weeks to get the results back. So you might want to talk with your son's doctor, and if he/she does not want to order the test, ask for a consult with a Geneticist.

Hope this helps!

[cure4jason]

Thanks for the help. We have now gone and had his blood drawn to test for Fragile X. They told us the results would be back in about 3 weeks. We have tested for all of the environmental causes, etc. in the past, and this looks promising. If this test is negative I will wait for the next possibility...

[electrongirl]

I have a 13 year old son with Fragile X and to think there may soon be a cure gives me so much hope but also scares me.

[FALGIU3]

Great work!! Thank you for sharing your experiences, they are of great help for all my family: I have a four year old son with fragile x and hope research will find a cure soon.....

[okgirls35]

I messed up my son was 13 months when we found out. sorry about that I didnt' edit.. oops!!! once again excellent video...

[okgirls35]

I dont think my comment got posted. This video is awesome!!

I have a three year old son who has Fragile X syndrome. We found out when he was three months. I have two other people in my immediate family who also have this syndrome. Thank you so much for sharing your stories. Truly amazing children with such loving hearts. I was just about in tears by the end.

[DuncanMacleod87]

this video kinda applys to me because i have this problem and i get to live with it everyday and i can see how hard it is for the parents and there children

[runetuna]

Great work. Thanks for sharing this info with the world.

(my best friends son has X)

[wandablee48]

Such a supportive,heartwarming ray of hope!

Mother of 1 X, sister of 3 X, aunt of 1 X, cousin of 2x

[pialpha59650]

Bravo!

keep up the great work folks!!

**father of 1 great X-girl!**

[wjparker]

Just a truly amazing video. Thanks to all the families for sharing. Keep on praying for a cure.

--mom of 3 fragile x kids