Living with Fragile X Syndrome: 'He is maturing ... it's just really slow' | USA TODAY
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- čas přidán 10. 07. 2021
- Andy Tranfaglia inherited Fragile X, a genetic developmental disorder
Seizures, anxiety, autism, OCD, and intellectual disability, Andy Tranfaglia was born with Fragile X Syndrome, an inherited developmental disorder.
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Going to dispute the comment about FXS having no physical problems or issues. Not at all true. Curvature of the femoral bones, an odd "gait", not being able to skip or broad jump, testicle and ovarian issues, high pallets, oral issues, thyroid issues, eating disorders, tremors later in life, early menopause, headaches, eyes deteriorate earlier in some cases, teeth are rarely in good shape, mental issues , heart issues,... I could go on...
My brother has fragile x and I'm a genetic carrier myself. Luckily I don't want children because I would never want to deal with the stuff my parents had to deal with. It is difficult enough to be a sibling. It's like living with a perpetual child.
I have noticed that animals is a great help for them. Especially horses. Since my brother started riding his confidence went up and his vocabulary expanded. He also learned how to express his emotions through words to some extent. All that just from sitting on a horseback.
I had not heard about Fragile X before this video. Thank-you for a bit of information. Andy seems so joyful and caring. Best wishes for him, his family and friends.
I went to school with someone with fragile x. Man he was so cool and always remembered everyone's name.
Anyone who loves Animals is ALRIGHT with Me! My Father, who has always been mentally ill, once said. To me, "Roberta, if someone dosent like Animals, watch out!". How right my Dad was..
Love from Sri Lanka Andy
He’s so sweet!
It runs in my family and I can relate to this video part of my family has this I’m a carrier so is my mom, my sister and so on so forth it’s very interesting to learn this 😊
God Bless Him and his lovely Mom..
this comment doesnt help anyone, god bless him? hahaha thats all you have to say? hahahahaha
I have fragile x syndrome myself and so does my twin brother
I feel for the father but he's in denial. there is absolutely something wrong physically with people who have this.
My son also has FX, support for this disability is close to none here in the Philippines. The only way to communicate with him is to ask questions that only need a yes or no answer.
A video I watched earlier said there is a support group on Facebook if that is any help?
I can relate.
My brother's both ate the same! Both amazing!
My son,Jesse has Fragile X Syndrome,he's 36,and I just got him back. I am a carrier of FXS,and as almost 55. I was shocked to realize how much my son has declined since he graduated high school, apparently no one has taken the time to work with him,& the day program he was in ,must not have either. It took two years in grade school to get him to comprehend money. He can't now. He has become grossly overweight,which is due to a thyroid condition left undiagnosed for years,his lack of activity and his severe compulsion to hoard food, Now that I have him living with me,I am left struggling to figure out how to do ANYTHING A with this CHILD. Any advice for me?
Other than maybe don’t dump your child in a care home for years )apparently you didn’t take the time to work with him mom.) I’d say throw em back in the home because I bet a lot more people cared and helped
Please reach out for support groups, locally & nationally. Your son will require day to day steps to start to learn these essential processes, but like the parents in the video say, research and compassion make the biggest difference. Please, don’t give up on him.
How long did you have no communication with your own son in order to be shocked at his mental decline?
praying for oyu and your son
im sad theres nobody lime xavier in the real world
Niilo22
On
Ihan samanlaista touhua
🥰
My xbf that I broke up with told me I should not have kids before I get test I told i don’t have it he doesn’t believe me
Why would he think you need to get tested?
Can he count to potato though?
what a really funny and cool and mature thing to say
Huh?
@@Gubbug Thanks bub!
@@theharmonyofknowledge1286 ZOOM!!!! Over your head lol.