Family Shares Their Experience with Fragile X

I teared up watching Monique. She is so eloquent and aware of her difficulties. It might even be harder to be in her position than that of her brother and cousins with more significant levels of disability. Good luck to her and all of them.

my coworker has fragile x and i've noticed he gets frustrated more easily than me

Starting to strongly suspect I am a carrier and have passed the gene onto my kids. Two have autism. One has adhd. I have adhd. My father had ‘PD’ which I now suspect was probably the fx ataxia syndrome. My son with autism was tested for fx but it came back saying ‘normal’. They didn’t state the range though. But he was dx with global developmental delay at age 4. I suspect there is quite a link bw fx and EDS - and my son with ADHD symptoms has many physical signs of EDS as do I though not in the extreme range. Something I suspect is the carriers do tend to have collagen issues that are linked with EDS - I notice many parents of children with ‘Autism’ (fx?) get frown lines which I have and my father had. I am starting to think this is due to thinner skin and being more prone to getting wrinkles and lines. Same with unusually long toes & fingers and collapsed arches. Sensory sensitivity - I could never stand fluorescent lights and always wondered why other people could, and loud noises and textures. High anxiety, and digestive issues. Perhaps my son with ASD is just a carrier but still affected cognitively due to other factors.

My family have it too and it's beyond rare and nobody perfect or normal no such thing

I had a friend (sadly she is now deceased) with two Fragile X children, a boy and a girl. Her daughter went on to college and became a teacher, as a young child she had delays, but was diagnosed around 6-7 years old. Her brother, unfortunately is severely mentally impaired and non-verbal. I had the greatest respect for what she went through every day. She was the most loving, patient person I've ever known.

I know dr’s will immediately deny any connection but thought I’d ask it here. Any information on this being triggered or worsening by childhood vaccines?

Our son has fragile X. He is now twenty-six years old. He hates going to the mall because of the fluorescent lighting also. When he complains about being bored I just tell him we'll go to the mall and he'll laugh and laugh.

Forest School 😍 yesssss!

What ever guilt youre carrying Mum, you make up for it being a fantastic, educated on your kids condition, Mum ❤❤❤

I don't understand why they didn't adopt children rather than making other souls suffer.

Acapulco

What an articulate and intelligent young woman

What amazing kids!

If the mom is the carrier of the gene she will pass it on to all her sons. If the father is the carrier he will pass it on to all his daughters. The boys have it more severely.

Thank you so much for telling your stories, ladies. Love from Germany, Andrea

Can't watch this fascinating documentary because the music is so loud and takes away from the purpose of the film. Very irritating!!!! Prayers for these families.

This family is blessed that these sisters are all going through this together! 💚

I'm an autistic person and I am fascinated by this! To see just how similar fragile x and autism are - I wonder if we have some kind of similar origin?

I found out I am a carrier for fragile x I Diddnt even know about it

Wow. I am 59, have all the symptoms of full mutation, my son has all the symptoms, daughter shows some, and both grandsons from both my kids show signs of autism. I do know my son couldn’t have passed it on to his son. It made me wonder if...even though he can’t pass on the X chromosome to him, could some of my son’s mutated genes be passed on. It makes sense, but I find I know everything until I learn the facts. 🙂
My older sister’s kids show signs of Fragile-X, and my sister’s grandson was Dx’d autistic.
I stumbled on “Fragile X” when my daughter told me she was on the spectrum. Venturing out to prove her wrong-after she told me girls had different symptoms from boys- and on reading all the girls symptoms, I discovered I was autistic. Then one day, I decided to look up “big ears autism”, since I was the only one of my siblings with big ears. No only do I have all the symptoms of autism, but I have all the symptoms of “Fragile X Syndrome”. I can’t get tested. I have one doctor who lied about ordering a bone density test, even though I told him I had osteopenia 12 years ago. Long story, but if he wouldn’t order a bone density, there’s no way he will order a Fragile-X test. My pain doctor’s office told me it was out of their realm to order it. But my insurance will pay, and children’s hospital will do the test, even though I’m clearly not a child. I just need an order. This is very frustrating.

My sisters and I all have kids with fragile x especially the boys. These kids remind me so much of my son when he was there age. He started off not very verbal, slow to stand, walk, crawl. Anxiety, noises, cried alot as a child. Once he got into school he was very social and happy. He has great sight memory and is funny, he likes to mimic cartoon characters and some actors. God bless

Put the rabbit down,why let him hold it

My son is 32 years old and he was diagnosed with fragile X when he was three and a half

Its so nice to see the other boys accept him

Who are the doctors denying genetic tests? Wankers

Glad I watched this - I thought it would upset me more, but it made me smile & appreciate 3 SuperMums & their kitchen table humour!

I kept thinking it said “fragile legs” 😭

Don't let that child hold the rabbit, he is not careful with it, he will hurt it

And people say there are no differences in gender smh

I can relate, I have raised my daughter alone,she has the full mutation of Fragile X. Her Mother is American and returned to the USA in 2003. I knew there was something wrong but the Genetic Services wouldn't test her, they said if anything was wrong it would show later, my daughter lasted one hour on her first day of school. The next 2 years were hell, it was only when the school called in Child Mental Health Services that they took the problem seriously. They said my daughter was damaged due to her Mother leaving her so early, but I knew that was rubbish. I contacted a different dept at the Royal Children's Hospital and explained what was going on. They said she needs to be tested straight away, which they did. My daughter's count was almost 1600. She was then placed in a special school and although she struggled they knew how to deal with her blowups and there were many of them. She is now 21 and understands the syndrome she has, she insists she doesn't want children like her and still to this day struggles with anxiety. She finished school in 2018 and hasn't ventured much outside her bedroom and internet since.

I have Autism AD HD OCD, i really struggle with really bad anxiety and depression

Ok but poor bunny

My son was tested for this

feeling guilty about a genetic is so tragic. She did passed his Fragile X, but she also passed his beautiful face, his tiny sweet hands and his wonderful future. She gave him Fragile X, but she also gave him life... with her love and support, a amazing, good life!

Some comments were quite mean and or perhaps out off line especially as these ladies were sharing something very personal , and the one comment about them going on to reproduce offspring struck me as very hurtful , I do wish ppl were a bit more kind in there comments regardless if they didn’t mean anything mean by it etc bcus it just really struck me as being mean , after all none of us are perfect ,❤️I wish them all the best .

❤️

Take that bunny away

I also have this and it's comforting knowing that I'm not alone. I also have the full mutation and I struggled with school heaps but I got tested when I was young but they didn't give the results back because I wasn't 16 which was weird but I got retested when I was 16. I have a few family members with it also. I live in nz too so that's quite cool knowing that other people are like me other than family.

"Neurotypical kids". Hmph.

I had heard of it

The way that kid is gripping that bunny has me worried

I have a 50% chance of my baby having fragile x. Is there a way to see if the baby will have fragile x before they put it in you?

I carry Fragile X. I'm a women and got it from my dad.

All 3 of my fiance's kids have Fragile-X

My daughter has autism she is being tested for Fragile X seeing this moms and the struggles they go through makes me feel like in not alone in what I'm going grouch with my daughter.

My son has fragile x. He was also diagnosed with ADHD and was raised in the TX hill country. School was the worst experience I've ever had to deal with. We eventually homeschooled. He's grown now. While he is still quirky he's doing well.

These children are so precious.

I have the genetic thing where when I have kids they have a 50% percent chance of having fragile X. Before I do have kid they can get tested to see if they do. I'm nervous for when I do have kids this might happened but it will hopefully go well. I'm also the only carrier

A friend of mine with 21 siblings was studied by the Mayo Clinic in MN because many carried and were affected by Fragile X.

It is so sad they placed that kid on the special school and his behavior deteriorated because Fragile X kids imitate, sot he kid was immitating disabled kids, when they took him abck to normal school he started becoming more normal. That is just sad.