Living with Fragile X Syndrome: 'He is maturing ... it's just really slow' | USA TODAY
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- Опубліковано 21 вер 2024
- 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...
I think I have this tbh. I had frequent ear infections for the first few years of my life, I have large protruding ears, diagnosed aspie at age 4, 79 fluid reasoning iq score (subhuman), large testes, high palate (but that can also be from my LAMB2 mutation), tremors, 130lbs (can never gain weight), headaches, astigmatism, near-sightedness..
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 feel for the father but he's in denial. there is absolutely something wrong physically with people who have this.
I went to school with someone with fragile x. Man he was so cool and always remembered everyone's name.
Great video,this helped me to understand the Fragile X syndrome better as a medical student.
Andy seems to be a great man and Props to his parents for sharing this video.
Lots of love to their family .
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..
Andy seems so pleasant and kind. ❤
He’s so sweet!
My 26 grandson has fragile x and he has all the indicators Andy does.
My ex-husband is a carrier and now has fragile x ataxia and has dementia.
We knew nothing about this condition until my grandson was nearly two years old.
I worry or My grandsons future.
Who will care for him?
He has extreme anxiety.
His mother, my daughter has breast cancer and mental health issues, and lives on the other side of the country.
I have fragile x syndrome myself and so does my twin brother
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 😊
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?
God Bless Him and his lovely Mom..
this comment doesnt help anyone, god bless him? hahaha thats all you have to say? hahahahaha
Love from Sri Lanka Andy
Niilo22
On
Ihan samanlaista touhua
I can relate.
im sad theres nobody lime xavier in the real world
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
@@butitssummerma6436how do you know this person is the mother?
My brother's both ate the same! Both amazing!
Does this make you a carrier?
@@laurenanderson7330 Yes, Fragile X is carried through the female gene. It's mostly affect the males. I had a daughter and she has had a daughter. It'll be my granddaughter that'll have to be check when carrying a baby.
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.
@@jcdenton4621what do you mean?