Our Children With Rare Medical Conditions | On The Red Dot | Undiagnosed - Part 2
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- čas přidán 14. 03. 2023
- Atira’s seizures are back after 13 years. Dzakwan has a meltdown in the mall. And a diagnosis has been given for Jayden's condition at last! All in this week’s episode of Undiagnosed.
One of the symptoms for Atira and Seana’s condition is seizures. Doctors cannot treat the underlying cause of these attacks without a diagnosis; they can only manage the symptoms. However, Atira is now faced with a familiar challenge as her seizures are back after 13 years!
Meanwhile twins Dzakir and Dzakwan are brought out for lunch. But a routine lunch outing at the mall takes an unexpected turn when Dzakwan has a meltdown.
16-year-old Jayden’s condition is finally diagnosed! However, latest research findings show that patients of his condition possibly develop a new symptom before they turn 18. Is Jayden at risk too?
WATCH MORE Undiagnosed
Part 3: • Caring For Our Childre...
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Watch Part 3 of Undiagnosed here: czcams.com/video/goH9bDpNtFE/video.html
Big kudos to the older siblings helping out the twins so patiently!
They'll grow into empathetic and responsible adults! ❤
Can't help but feel that the older siblings feel left out because most of the parents attention goes to their twin siblings.
It's nice and would build them character, learn empathy ect.... But their childhood is being taken away and been put 2nd coz the twins are unable to do anything so when mum and dad are gone... The siblings will have no choice but to care for them
Life long commitment, as someone who was forced into caring.... I still have resentment dispute getting therapy
@@CK-pr6rs defo are left out
@@Lulu-ut9pv The parents should never make it an obligation for their other siblings to take care of the twins. Everyone have the right to their own life after they reach adulthood.
I was amazed at how fast they named the syndromes name for the sisters...until I realized it was the doctor's name 😂
New diseases are often named after the doctor who discovered it
Hahaha😂
Honestly just hope that people who want to be parents could all watch this and say yes I'm ready to be a parent knowing that my child could have these genetic/health issues, I'm ready to deal with whatever that comes and I really want a child that badly.
people don't know what they sign up for before they decide to fertilize themselves.
Whether your child is normal or not, you will face challenges in raising your child. I think develop yourself to be emotionally resilient. By all means do not be afraid to be a parent.
Ever since I was young I already told myself to be prepared to have a special child and accept them as who they are and be grateful for what God given me regardless of how they are. I mentally prepared myself for it all. At the age of 23, I birth my daughter and 7 years after she is diagnose with ADHD and Dyslexia. This is mild comparing to the children in this video but regardless it is still difficult. For all of you parents out there, children are gifts from God and be grateful for them. Much love 💕
It's ironic to see family become lifelong caregivers to children with special needs yet there are families who give away their pets because of small issues (eg behaviour)
That is actually extremly exaggerated. There are so many tests nowadays that you can do to detect genetic defects. Having a child with such a rare condition, that it cant be detected during pregnancy, is very unlikely and so also nothing that happens that often that parents in general need to think about. Even when your kid has a condition, there are many illnesses, which allow the child and its family to lead a normal life. Having a kid that is disabled to that degree, that it is completely unable to care for itself and to comminucate and having no chance of detecting that through any test that is available, is really very rare. Thats like when you would say, all parents need to think about before even trying for a baby, if they could handle the situation that their kid could have a deadly car accident and die.
If all parents would think about anything that could happen to their child and avaluate if they could deal with all these possibilities before even getting one, then there wouldnt be any humans on earth anymore.
plus anyone can become disabled at any point in their life. People who want to be parents must be prepared for this.
dzakir and Dzakwan have lovely older siblings.
a friend of mine has two beautiful children with mental and physical disabilities. The parents were tested and they both carried genes that produced problems for their children. They have done well to stay together, endure, work with the medical system, therapies and although they would never be on their own...they can do basic life skills...am so proud of all of them...I cheer all parents who go through this daily, for decades and the worry they must have when they pass away...who will look out for their disabled adult child...praying they have siblings.
The twins understand a lot and know how to show their wishes.
Kudos to the families n parents! Good job
Meltdowns ....
If you ever see any special kids/adults having a meltdown what you should do is
1) Decide if you want/can help. If cannot help then pls move on. You are of not much value to the parents/caregivers.
2) if you decide you can/want to help, ask the caregiver (at an appropriate time) what you can do to help. If their answer is nothing, don't feel bad. Just move on.
3) No need to point here point there. Nothing unusual about a meltdown for special needs persons.
How do I know?
I am the parent of a SN teen who once had a major meltdown in the middle of AMK bus interchange..
are there really people that judge special kids for having meltdowns 😡😡 it’s beyond their control…
Very informative series!
Best blessings to these families. This is why having compassion is so important.
I feel so sorry for these families. Necessary care is 24/7 with no breaks and no holidays. Very difficult!
These kids amazing .❤❤❤
This is a lovely sister but my heart goes out to the kids and their family... At least they are teaching them to be some what independent however their siblings will have no choice but to care for them for life
All parents and family this children are so wonderfull and supporting.
Tip: use baby call with camera and alarms if needed when putting a special need child in their own room. It really helps. For instance you could put an alarm on the door, so you know if the child leaves their room in the middle of the night.
Why are there not support staff in the schools? I was an SEN teacher in England and had classroom support in the form of paid staff called learning support assistants or teaching assistants, I’m shocked the grandma has had to go with him every single day of his school life! Surely this isn’t normal in Singapore?
There are support staff and Allied Educators in schools. However, depending on the school, some schools encourage caregivers to be part of intervention as caregivers can be shown how to guide the kids and implement the strategies at home too.
There are learning support assistants in school but the amount of funding given by government is just not enough to have more...
Atira needs some noise cancelling headphones. ❤
Came here to say the same thing! Get that poor girl some ear defenders already :(
I could see Jayden using a Tobii Dynavox. The issues are obviously only physical.
its raelly really really real fustrating to get diagnose with rare genetic only when at adulthood and realised the symtoms were already shown whenn at young age but not discovered/awared of
These Parents are god and his bless them and the children. Hopefully they will all be able to find the cure.
My daughter has disability.now she is working in a IT company staying independently in hydrabad.all credit goes to my parent
Did anyone noticed wheels of Fourchen playing in the background
Are there not any support staff in schools? I’m in Canada, and special needs students have Education Assistants to look after their needs while in school.
My same thought. I was an sen teacher in the uk and we also have learning support assistants etc to help the students, this is across the uk
Nobody can match a family member. I have seen special Ed support staff in the US some are good and some are just they may not even exist!!
The funding from the government is not enough to support more learning support assistants in the schools.
The one boy who didn’t want to buy shoes looks like he has marfans syndrome too, he’s tall, slender, long long hyper mobile fingers and the facial shape of someone with it too. It’s linked to other genetic conditions as they wondered if I had it, but I had hEDs and vEDs instead
Yes, I agree. Marfan's affects the FBN1 gene (mutation on fifteen). I feel like their genetic testing would've caught it?? It's very Interesting.
Such great parents
I wonder why the sister’s parent didn’t do a genetic test on her second child when she was pregnant
Sometimes, those kinds of tests are too invasive and can result in miscarriage.
They actually did. It was shown on the programme. When they had wanted to try for a 2nd baby, they did a genetic test in India and were told everything was alright. Hence, they went ahead to have a 2nd baby.
There's a part 1 of this series as well, it's mentioned there. They did test, profusely. All was well, according to the test.
We just found out 3 days ago our baby girl has PURA, if Jayden's parents can reach out to us so we can know more about it.
why are they still mentioning cure for genetic condition? Is is possible at all to fix gene defects?
How old is atira?
Just like most teen boys, he had no interest in shopping. 😊
is it possible that this can happen if parents are related to each other? like cousin marriage etc
yes i agree.mostly muslims do that
It could make it more probable. More chance both parents carry the same genetic mutation, giving a higher chance of passing it down.
1. no child porn no sex with minors no illegal drugs and no illegal firearms in any nation or violence against women or children!!!!!!!!!!!
Damage has already done and cannot be reversed. even if there is a cure, it won't work on Jayden because he is too old for it.
How do I meet atira and seana in person?
do athiras and seana parents are relatives..anybody plz answer
nobody will know until they do a DNA test
1. no child porn no sex with minors no illegal drugs and no illegal firearms in any nation or violence against women or children!!!!!!!!!! brics vs g7!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I wonder if these syndromes are due to environmental exposures.....
At 27/28 if you're feeling fomo on makeup products that your friends have, then the problem is not inflation or the rise cost of living or lack of money. The problem is you.
1. no child porn no sex with minors no illegal drugs and no illegal firearms in any nation or violence against women or children!!!!!!!!!!!
1. no child porn no sex with minors no illegal drugs and no illegal firearms in any nation or violence against women or children!!!!!!!!!!!