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Caring For Our Children With Rare Genetic Disorders | On The Red Dot | Undiagnosed - Part 3
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- Опубликовано: 21 мар 2023
- In Singapore, 3% of babies are born with a birth defect every year. Some of their conditions remain a mystery. In Undiagnosed, On the Red Dot follows the families of five children with rare and unknown diseases, as they search for answers hidden in their genes.
Dzakir and Dzakwan’s family discuss living with the unknown, and a new round of genetic testing reveals good news about a potential diagnosis.
The Menezes family prepares for their trip to India, where they intend to reveal Atira and Seana’s diagnosis to their grandparents. But Atira’s sudden recurrence of seizures may throw off their travel plans.
A new symptom plagues Jayden, and a doctor’s visit reveals a troubling possibility.
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About On The Red Dot: CNA's weekly programme documents the stories of ordinary Singaporeans and celebrates their resilience, identity and sense of belonging.
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Hello, Jayden's sister,Sherise here. I think there has been as misunderstanding concerning my parent's answer on why they had more children. While taking care of Jayden is a concern, I assure all of you that my sisters were not an afterthought. My parents often shared that they love children very much from the start, to the point where they wanted 8 children if they could. Me and my sisters were never once overshadowed or neglected by our parents. They have invested the same time and energy on all four of us, allowing us to pursue our dreams and aspirations freely without concerning ourselves with Jayden while we still have our youth. For example, I am still allowed to be involve in hall life in university and my sisters are allowed to go for dance competitions and open classes. Our parents are still the primary caregivers of Jayden and they allow us to proceed with our normal schooling without needing to take care of him. I implore everyone to please refrain from negative comments about my parent's parenting or decisions. It took them great lengths for them and our entire family to reach the stage we are today and share our story. It would pain me if this experience discourages my parents and other families with special needs children from sharing about their story.
i support you, pls ignore them
I think the issue many here have is with Jayden’s mother saying that was the decision to have more children, so that when the parents are no longer around the burden of looking after him doesn’t fall on that child alone.
That probably gave the impression that Sherise and her sisters were literally born for the sole purpose of looking after Jayden. But since Sherise has said this is not the case, I think we should just leave it at that.
Thank you for taking the time to explain your situation. I think there must have been an unfortunate framing because it really does look like you and your sisters were being forced into caring for him. Jayden is blessed to have a family with you all in it. I hope he can continued to be cared for and you and your sisters are able to live the life you all want, be it individual pursuits. I will apologise for the comment made earlier, and I hope your parents have explored every avenue possible. Please take care of your well-being nonetheless. To any other family with special needs children out there, the words of strangers do not matter, because the strangers only have a narrow picture of your lived experiences. As the documentary has shown, what these families needs is not judgement, but compassion.
Thk u for speaking up cuz more often than not, parents with both disabled and able bodied kids will focus everything onto the disabled sibling but the able bodied sibling gets left behind. This is a very real situation that happens even now so it’s important to ensure that the able bodied siblings don’t get left behind or feel burdened to be a lifelong caregiver to their disabled sibling. But since it’s clear that u rlly do care about ur brother and want to take care of him I say there’s no issue there
Just please know it’s ok to feel overwhelmed and tired and that u r allowed to take breaks and live ur own life. Caregiver burnout is very real and rlly takes a toll on people
@@P53eud0nym05 yea the phrasing was what got people suspicious abt the family
Dzakir and Dzakwan’s sister’s documentary made me tear up!!! the last part🥺❤
Jayden's sisters and Dzakir & Dzakwan's sister!! You girls are doing great!!
Sometimes we take things for granted. Seeing how these two parents and many others love their children breaks my heart.
Not all siblings find it a burden. And won't grow to hate or dislike or blame their parents or SN siblings. Some siblings actually do love to help and are willing to take over when their parents are gone. Believe it or not.
There rlly needs to be more support for caregivers too. Caregiver burnout is very real and rlly takes a toll on people
Yah, I hear stories of caregivers after work just feeling so drained, heavy and crying
Being one of the primary caregivers can be mentally and physically draining. If the family has the means to hire external help to take care of their loved ones with special needs, it will be the best for everyone.
Unfortunately, many do not have the means to hire external help. As such, they have to depend on their own family. Hope more support can be given to family with special needs.
Thanks CNA for producing this series. It has been an eye-opener. Hope this will create awareness so that people can be more accepting, forgiving and understanding towards individuals with special needs.
This is actually a social problem for Singapore. The government encourages the citizens to have more kids... But genetic disease, ADHD and autism do take 3-5% of all human population and most likely 1-2% would not be independent. If any country is really keen to growing the population, they must first address the welfare support of special needs. This would encourage more young families to at least be more assured the government have the facilities to support.
Totally agree.
If they r not gonna have the facilities and systems set up for the disabled population, they shldnt be encouraging growing the population
More people being born=More people with disabilities will be born
I dunno, but the cases children with autism in Singapore is slowly on the rise, to me the reason of the "oh, cases suddenly increases because we have more technology and apparatus to diagnose children and babies if they are on the spectrum or not", that kind of reasoning does not really help address the real concern of the phenomena, and it just sounds like a diversionary response
yes! having undiscovered genetic diesease is really a very big hit on us and esp when am only the one have it among relatives of same level and when it have no cure
Actually to those comments abt Jayden’s parents being “awful” as they said they had more kids to help take care of Jayden, I disagree.
As an only sibling to a special needs child, I wish I had someone to share this (sad to call it) burden with. As much as I love my sister, I fear for the future when my parents pass on and I become the sole caretaker for her. Sometimes the financial and emotional stress can be hard to handle alone.
I agree with some comments when they say that children should not have the exact same responsibilities as the primary caretaker while they’re still young. But to be realistic, it’s a sooner or later thing that it becomes the reality that the siblings will be the future caretakers. (Unless you really wanna be the a-hole that abandons your kin lol)
Anyways, spreading love to those caring for people with special needs
Jayden's sisters can always move on with their life if they don't wish to care for him and I'm sure the parents would be able to set up and arrange for his care even when they are not around. We can't judge their whole decision just by the 1 minutes of sharing from the mom. The last thing that the family need is backlashes from keyboard warriors that knows nothing about their struggles and pains. If can't say anything good, better say nothing. Peace!
I wish more people would think like this!
Really enjoying cna insider documentaries. Very informative and insightful. Thank you!
If government encourages population growth, it should give more support to families such as these.
This!, if Singapore want to encourage their local citizens to have bigger families the govt should properly have a program that can cater to families that may face unfortunate circumstances the led to have children with lifeterm disabilities. We are not asking for a ridiculous socialist like setting but normal siblings or relatives should not be obligated to hand over care of their disabled sibling should their parents are no longer around,
@@rdu239 Absolutely correct!
can't wait for the next episode🙏GOD BLESS CNA, the kids and the family..
Jayden's family is really smart and well-spoken
But parents are just plain selfish
Another excellent work from CNA insider. To be honest, kind of hard to bring myself to watch through the video without any heartache, especially when I myself is a parent.
I had a really uncanny feeling when I saw Jayden's family being bigger than normal, and I hated that I was right when his mother admitted they had more kids just so they could care for Jayden. That's just horrible! While it is clear that Jayden's parents can afford to have a larger family, it grinds my gears to find out that the sisters had to share a room with him throughout their childhood and adolescence. The sisters even commented they lost some sleep when caring for Jayden. I already found it very odd why he is not sharing the room with his parents instead. Other videos that covered families with special needs kids on this channel so far never grated me as much because their parents are fully responsible for their needs, not the kid's siblings. While I cannot claim to know their circumstances, I hope they better come up with more preparations for Jayden's end of life care, because should the sisters choose to have their own families, the care arrangements for him will become more complicated. They should invest in part-time nurse services like Homage so that the girls can at least have a life outside of caring for Jayden, or else caregiver stress will catch up with them and resentment can accumulate. At least for the family with the twins, the parents does not seem to pressure the older siblings to care for them.
EDIT: Jayden's sister has commented, so I will say that we should all not make instant judgements because we do not have the full picture. The best we can do is offer compassion and wish the family well. We do not know their lived experiences and even if we see a snapshot, the decisions they made is for them to shoulder, not us.
They're just selfish. After finding out the son has a rare condition, they decided to breed caregivers for him. But what if the subsequent children also has the condition? Are they gonna try until they get a normal kid? Because there has to be someone to takeover the parent role right? Plain selfishness.
YES this. and if their sisters are reading this, please know that it is not your duty and responsibility to take care of Jayden. if you choose to do so, great on you. but if you choose to tap out, it is also not your fault. it wasn't your choice to give birth to jayden, its your parents' choice and not yours. so if you feel burnt out, its completely ok to say that you deserve to have your own life.
They're literally bred and groomed to be his future carers
@@ewong1432 Who are you to judge a parent's desire to have a family? we are not in the place to judge and mock their logic on such private things
you saw the reply, so what's the point of keeping this comment here? you retarded or something?
I've been watching this series and am happy to know that athira and siera are from my hometown
Jayden’s parents are doing the best they can. Quite disheartening to see negative comments here. Hope we can try to put ourselves in the shoes of the family members of Jayden.
I agree, more people need to walk in Jayden’s family’s shoes for at least a couple of miles before they comment such negative comments towards the family.
Reading the comments below, I'm so glad I'm not the only one who had a bad feeling about Jayden's parents. Intentionally having more children just so they can only be Jayden's caregivers?? That's really f@#$ed up. I really hope those girls go ahead and do whatever they want in THEIR life and backfire whatever selfish plans their f@#$ed up parents have for them.
Honestly people who perceive situations they way you do make me worry for the world of disabled folks.
@@anamerandom5147 It is never the siblings' responsibility to care for the children that they didn't create. Disabled folks should have help from the government and other social services. The burden of care should never be placed on the siblings.
And what if the government don’t care? Not all countries have enough funding for that personal caregivers are very expensive and you think the family can afford that? I’m not saying their intentions are right but it’s not a black and white situation
I think Jayden parents have a good plan if they will not be around one day. For the love of their son. Please give them a break from all the comments .they don't get on tv to be judged. The siblings are working together to take care of him they are not angry and enjoying and learning the process. So i dont understand why the readers can be angry at the parents. In addition they stated that they do not want to burden one sibling after they are gone. In fact i felt a great relief that Jayden has ppl who will look out for him as he is such an adorable boy and deserve the limelight indeed.
So, you really think that having more children for the sole purpose of them being their disabled sibling's caregiver is a "good plan"? Even if the parents are the only ones who solely and selfishly decided this and those children absolutely didn't even ask or choose to be born? Because you see, a good plan would be something like the parents finding a proper caregiver whose actual job is for them to do just that. Not the siblings. So, imagine if the girls actually decided to live their lives, like get a job, move abroad, get married, etc etc. You don't think Mommy and daddy are not going to use guilt-tripping, gaslighting, manipulating, and emotional blackmail tactics to get the girls to fulfill their dreams of being Jayden's caregivers?? Since it's much easier than actually planning on getting a full time caregiver whose job is to do just that, right. (Sarcasm, for those who don't get it)
Whats wrong with having more children for the love of children. Singapore is working towards an inclusive society. Yet these comments are destructive and backward thinking.
Not to mention that some of these families can’t afford professional caregivers for their special needs children. Why are so many of these people in the comments section ignoring this reality?
2 days ago the 4th Episode was aired on TV in Singapore. Anyone knows why this episode is not yet uploaded?
Thx
Depends, maybe post production editings
Because they didn't feel like it
Why can't children with developmental delays be allowed to stay in children's care for longer time...am I not understanding why, or is this just bureaucratic nonsense?
9:43 its too much for me... im crying at 5am, i miss you mom T.T
Cannabis works miracles for seizures!
To Jayden parents, taking care of him is not his siblings’ responsibility! They did not choose to born into this world just to take care of their brother. Unless they are willing to then it’s another story. Please let them get on with their life if they want to e.g. study or work abroad. It’s unfair to them.
That was my thought as well! They didn't ask for this. The parents should plan for a future for Jayden when they are not around that doesn't involve his sisters being responsible. A care home etc is probably a better option for jayden.
What do you do when you know your kids has special needs?
- create more caregivers!
In the first video about them i saw how unfair they were to his sister, she had a birthday and a cake but it was all about Jayden. Lovely girls, they need love to, are they punished for being normal?
@@Wendy-bd9zu Ya and they are clearly still young, and deserve to have a typical teenager life outside of Jayden as well!
@@Wendy-bd9zu and one of the sister wanted to go for overseas studies but hesitant because need to take care of her brother. Hope Jayden’s parent can see our comments. Their daughters deserve a normal life and freedom like other youngsters.
A full blown seizure of 15 minutes.. the damage it might have done.. poor girl.
It is absolutely not the job of the siblings to care for their sibling in adulthood.
Yes, absolutely not their job. But no parents will want their special kid to be left alone with nobody to care and love. They have no choice. Hopefully the govt can come out with some help and support for these children when the parents are no longer around.
But when the parents are not able to make enough money to pay for a professional caregiver for their child with special needs, what are they supposed to do?
Everyone’s negative comments towards this family are just shameful and disgusting and so disrespectful. Not every family can afford a professional caregiver and sometimes they have to place the responsibility of caregiver on their older children because they don’t have any other options.
@@KaylaPearlCPNinja It is not the siblings' fault or responsibility that they "don't have other options". They shouldn't have had more children if they could not take care of the ones they already had. Don't have kids if you can't accept the fact and plan for the possibility that they might be disabled and require extensive care.
But it is absolutely your job to get concerned and triggered on their behalf so you'll soon take over Jaden's care hopefully?
@@majormajor7925 parents job to work with rehab services to get proper coverage and lifespan planning.
Let kids be kids, not caregivers.
Sometimes they don’t have a choice because they cannot afford a professional caregiver. Please stop being judgmental.
So even if the daughter assured (or at least attempted to) the viewers in the comments section here that the other 3 siblings currently has the freedom to get on with their lives without being the main caregivers, who can guarantee they can continue to do so when the parents are retired, old and in poor state of health to take care of Jayden? Wouldn't many (if not most) of the parents have this mindset that "We have allowed you and your siblings to live your lives freely for a large part of your growing years, it is not too much of Dad and Mum to ask you to share the duties of looking after your brother at this point now, isn't it?" or "We are a family" etc. You know the usual guilt-tripping comments. Of course, if there is no such expectation at all from the parents, then all well and good. But in reality, the unspoken rule is immediate family members are expected to shoulder this responsibility.
It is also a fact that Jayden's mum made the comment in the show that "We did actually tell our girls that Jayden is part of their life, part of their responsibility when we are no longer around. So that was also the decision to have more children, because we don't just want one to actually shoulder the entire caregiving burden." So if it's not the truth, the perception from that statement cannot be ignored, which is why many of the comments here are made, based on the mum's (or both parents') thoughts.
Bro literally everyone has kids with selfish intentions, don't be so concerned, just make sure you don't reproduce, best thing you can do.
@@majormajor7925Yes, wish those people who can't give their future generation a happy and carefree childhood (at least at point of conceiving) should have some common sense not to have kids, yourself included maybe.
Too much focus and coverage on Jayden 😒
I’m sorry but I feel like Jayden’s sisters are defending their parents in these comments because that’s just what kids do. Even in the worst of circumstances kids will almost always defend their parents. It’s sad that they were born to care for Jayden but there’s nothing any of us can do about that. It’s their lives and if they choose to follow their parents wishes and be caregivers then so be it. If they like it then I love it. Wishing them all the best.
Yea true
It’s good the sister recognizes she maybe a genetic mutation carrier and should be careful and find out if she does carry that genetic mutation
I don't really like jayden's parents, parents can choose to have kids or not but kids cannot choose their parents and circumstances.
I totally disagree with you, it’s hasn’t been an easy road but they are doing amazingly well in taking care of Jayden
@@KaylaPearlCPNinja Then they shouldn't have had so many kids. It is their responsibility to care for Jayden whether they can afford to or not.
wpw
How can Jayden's parents be so selfish? Jayden is his parents' 2nd child out of 4 children in total. if Jayden's parents chose to have more children who also end up with genetic disorders, then the result would still be the same - eldest child bearing the burden of multiple siblings with genetic disorders? Is that really ok? I hope they can reflect on their mindset and realise that it's wrong to expect his siblings to take care of him.
It's so gross that jayden spits at his siblings I find it inappropriate