Real Families Exclusive: The Challenges of Fragile X Syndrome
Vložit
- čas přidán 12. 09. 2024
- These three sisters have all unknowingly passed on rare and severe genetic disorders onto their children. From Fragile X Syndrome to limb deformities, the disabilities vary but the mothers love for their children never falters.
My Perfect Family invites us to see the lives of modern families living with various disabilities. We see the highs and lows of being full time carers as well as the eye opening experiences of people with disabilities.
Real Families brings you stories of modern-day family life from around the world through the eyes of children, parents, and parenting experts. Stay with us for weekly documentaries and full episodes of evergreen family documentaries and parenting TV shows.
Subscribe to our channel here: goo.gl/y8WzCa
More from us:
/ realfamilies
/ realfamilieschannel
/ realfamilies
From: My Perfect Family Ep19
Content Licensed from TVF International to Little Dot Studios. Any queries, please contact us at owned-enquiries@littledotstudios.com
#RealFamilies #Documentary #Parenting
These mothers are saints. I can’t even fathom how extraordinarily challenging the pandemic was for families that have children with special needs.
Prayers to all struggling 🙏
PLEASE FAMILY members of those with special needs take an hour out to help with the kids.. An hour to a sleepless mom is the 🌎
If I knew my eggs carried this rare genetic condition, I wouldn’t be popping out any babies. If I had one with it I’d STOP at one, lol. I know it’s a lot of work the older they get. But kudos to these moms. 🌻
Facts💯%
It's rare to have a genetic condition diagnosed within the first few years. Unless there is a severe visible malformation, metabolic issue causing failure to thrive, large delays in motor skills that persist getting insurance to pay for genetic testing is almost impossible.
@@megantheboys7997 Not sure where you live but in most countries that is not true at all. In fact, even in the US where healthcare is a nightmare, prenatal genetic testing such as the NIPT is both encouraged and covered by insurance.
@@hollydaugherty2620I was discouraged from getting any genetic testing. It was super difficult to even get a Ehlers Danlos Syndrome, NVLD, & Immunodeficiency Syndrome.
Let alone getting evaluated for Fragile X or mitochondrial conditions.
And even when you get diagnosed & you’re an adult there’s very, very little support. To live independently to get supportive treatment.
And I live in the States 😦
To Bronie: you are phenomenal and God knew His business when He chose you to be those beautiful boys' mother. Their needs may be relentless, unending. But, apparently...so is your love and patience for your sons. I feel so humbled and inspired to do better because of your story. God bless you and yours ❤🙏
Was this made 2 years ago, at start of pandemic? I cannot imagine the exhaustion and loss and deprivation for parents stuck in these situations for long periods over years. These 2 Mums are such loving parents and profoundly important advocates for their children. Thankyou for sharing their stories.
This is exactly why prenatal genetic testing is so important.
I almost looked at your comment wrong yes prenatal I thought you were suggesting abortion after genetic testing showed abnormalities
@@angmoulton8528 there's literally nothing wrong with that either.
@@insertnamehere8723 no there isn't but if you keep deciding to have children and play Russian roulette with lives that's sick and wrong you don't keep aborting babies to finally get a "normal" one
@@angmoulton8528 who's for you to decide that? It isn't your decision to make. Besides, I'm just find that logic a bit inconsistent considering the aforementioned basis of which is deemed acceptable to abort- which you agree is fine. So you're basically telling me it's okay, but suddenly isn't if an arbitrary limit is reached and/ or if the child is concieved and is normal after the mother has previously aborted? That's kinda what im getting from you here amd that makes no sense. Surely they wouldn't abort if they had a healthy, normal child - which I'm sure most mothers/ expecting partners would want - but that doesn't really undermine the decision to abort due to the potential capacity for recessive genetic disease until the desired goal has been reached. It's far less cruel to terminate the pregnancy than to potentially subject a child to the life-long suffering they will experience, that can grow potentially more burdensome on the parent- now that's not to say I don't respect the person's choice either way; if the person carrying the child is aware, willing, capable and prepared for such a task, but it's of no consequence if she decided to keep or terminate the pregnancy as both are perfectly valid and acceptable.
@@angmoulton8528 basically, this doesn't affect you so try to keep an open mind and empathise with what people are going through. Otherwise, keep out of others buisness if you have nothing to offer, besides potentially harmful opinions on things you're not equipped to tackle. Regardless, this really seems more an argument for genetic modification than anything else, if you ask me, since this argument would be null and void if we could just erase the genetic factors that lead to disease while not necessitating termination that you arbitrarily have evident contention towards or at least in some capacity.
In my opinion those aren't lives worth living really.
I think I wouldn't want to live this severely impaired if I was the one with these severe disabilities.
It's heartbreaking, you can just see these parents slowly breaking down. Listen to them talk, they are burnt out, running on empty. Incredibly sad.
I do not have this kind of strength.
Please go volunteer at a special education class, every child is precious- there are no perfect children- you can’t imagine how wonderful all children are. Certain Amish families only adopt severely and profoundly and medically impaired children. I taught in this Virginia classroom- such a profound experience. Be careful to judge what you don’t know about
I’m a special ed teach and although it is challenging every one deserves a chance at life
And the individuals you deem discardable all have potential and even purpose
I sincerely hope you educate your self on the differently able before you being to sling hate around🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
I wtched the first video of Nikky's family and I can see now how Maddy became a beautyful girl!
I am so glad this video brings light to the impact the lockdown has had on those with special needs and/or mental and emotional difficulties. I am, however, really confused by the choice of title for this particular video.
You’re confused…why?
@@hollydaugherty2620 did you watch it? It’s labeled “My Family Passed Fragile X On to Our Children” but the video focuses entirely on the impact of the lockdown on two families with children with special needs and the strain and efforts of their families dealing with the changes. Did I miss something?
@@jewelsgrl Probably because a title like that is clickbait.
Genetic testing is not the norm in the US, it is expensive, and I’ve learned so much from special children, no one can judge another parent- ever. I suggest you volunteer in a special Ed classroom for a semester- it will change your life. Otherwise you can’t begin to imagine how wonderful children can be- as well as challenging.
So disgusted reading all these comments on this video basically saying these children shouldn’t exist, that if one knew they were having a child with these conditions they would abort them or if they knew they carried these genes they wouldn’t have children etc. You’re perpetuating negative attitudes and stigma towards disabilities and creating an unsafe space for these parents. Next up we’ll have people pushing the idea that assisted suicide should be offered to parents who decide to end their children’s lives like that’s where our world is heading right now. These children are a blessing and we should never view them as a burden to society.
Very true
Yes, thank you! St Mary’s infant home has severely and profoundly and medically impaired children whose parents have them up. The workers there love those children- enjoy coming to work, each child has their own personality and is treated like their own. Don’t judge from the outside by a child’s inabilities, but enjoy the time you have with children and the abilities they have
@@MT-er7mm 💯these kids are a blessing, yes it can be tough to care for them but it’s worth it
God bless these precious families ❤. I pray Jesus will strengthen them each day.
🤩 THEY ARE SO CUTE AND PRETTY GIRL 👧
But why keep having babies👀🤦🏾♀️
I completely agree with you but the kids are like a year apart and it's likely they had no idea they had this disorder until they were missing big milestones, after the second kid was already born. When there's no obvious physical difference at birth it takes a long time to diagnose stuff like this.
@@miikoshka You’re absolutely right I had not looked at it from that perspective..Thank you🤎🤎🤎🤎
@@selenagrinage5631 it's definitely one of the reasons why parents should be taken seriously when they feel like something is wrong or off with their baby, even if it's their first kid!
Normal or not Normal he/she would still be my child so there for I could never get rid of a child!
How common is this in females
Fragile X is not RARE