Caring For Our Children With Rare Genetic Disorders | On The Red Dot | Undiagnosed - Part 3

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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[sherise]

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.

[trolldemortx]

Jayden's sisters and Dzakir & Dzakwan's sister!! You girls are doing great!!

[waffleisnice]

I don't really like jayden's parents, parents can choose to have kids or not but kids cannot choose their parents and circumstances.

[jocywzr]

Dzakir and Dzakwan’s sister’s documentary made me tear up!!! the last part🥺❤

[Young_padawan]

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.

[bootata]

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 <3

[lofu]

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.

[KanojoRinko]

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.

[nayanamalar]

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!

[aquaticaries]

There rlly needs to be more support for caregivers too. Caregiver burnout is very real and rlly takes a toll on people

[eth]

Sometimes we take things for granted. Seeing how these two parents and many others love their children breaks my heart.

[Jay-rucw]

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.

[msi]

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.

[yqmelody]

Really enjoying cna insider documentaries. Very informative and insightful. Thank you!

[ingenuity]

If government encourages population growth, it should give more support to families such as these.

[rachelc]

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.

[TanKianW]

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.

[tincoronelarnaprints]

can't wait for the next episode🙏GOD BLESS CNA, the kids and the family..

[hours]

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.

[v.e.jansen]

Jayden's family is really smart and well-spoken