Fragile X - Hitting the Mark

Fragile X - Hitting the Mark. This heartwarming film follows families living with Fragile X Syndrome, the #1 inherited cause of mental impairment and autism. See also how FRAXA Research Foundation is helping scientists to find a cure. Produced by Debbie Stevenson.

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[kclappFRAXA]

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

[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)

[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!

[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!

[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

[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.....

[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.

[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.

[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

[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