Redditer: Living in SG with a rare disease

[Tragedeigh]

Living in SG with a rare disease​

Tourist/non-local Question

Hi all,

My wife and I just had a son outside of Singapore. My wife is Singaporean and we were considering applying for Singaporean citizenship for him, especially if we move back for a bit.

However the issue is he has an ultra-rare mitochondrial disease (1 out of a million) that affects his heart and muscles. We have a care team in place here, as we live near a very good hospital in the US, but I wanted to understand what life would be like if we moved to SG.

We lived in Singapore for a decade and I’m a PR, but we’ve never really raised a child there, especially one that will require frequent hospital visits and heart surgery as some point in his life.

I guess want to understand what healthcare, schooling, NS, and daily life would be like for him, but open to hear any other perspectives.

 

[Leongsam]

What's the point of having such a defective kid?

 

[Tragedeigh]

What's the point of having such a defective kid?

AI says :

Life expectancy for children with mitochondrial disease is highly variable, ranging from a few years for severe, early-onset cases (often <3-5 years) to adulthood for milder forms. While 46% of cases may die within 13 months of symptom onset, many children, particularly those with milder phenotypes, live much longer.

Key insights on prognosis:

• Mortality Rates: A study of pediatric patients found a 14% global mortality rate over a 9-year study period, with an average age of death at 6 years.
• High-Risk Factors: Early-onset symptoms (especially before 6 months) and specific conditions like Leigh syndrome significantly decrease survival rates.
• Leading Causes of Death: Mortality is often driven by sepsis, pneumonia, and sudden cardiac or respiratory failure.
• Prognosis Variability: While some conditions, such as Lethal Infantile Mitochondrial Myopathy, have a very poor prognosis (often only a few months to 4 years), others allow for longer survival.

 

[sbfuncle]

What's the point of having such a defective kid?

You think the parent have a choice not to have defective kid?
So it should be
What's the point of having kid?
Or better
What's the point of living?

 

[Leongsam]

You think the parent have a choice not to have defective kid?
So it should be
What's the point of having kid?
Or better
What's the point of living?

It's a nice way of saying "let nature decide what happens".

 

[Tragedeigh]

It's a nice way of saying "let nature decide what happens".

The child will die very young...there is no cure for mitochondrial disease

 

[millim6868]

They are using Singapore government to pay n try applying for subsidises or benefits so can spent less,hv seen many foreigners chamge citizenship so as to claim subsidaries for kids with autism school n care centre,but what they don know is government also charge them an amount,so all lanlan, u look at mrt nowadays so many foreigner born citizen hv many autism problems

 

[Tragedeigh]

 

[laksaboy]

What's the point of having such a defective kid?

Creating jobs for those who will take care of them. As long as the parents are paying and no welfare is leeched.

 

[laksaboy]

The child will die very young...there is no cure for mitochondrial disease

Then Roland Tay gets another customer. Win-win.

Some people spend a fortune for the funerals of their pet dogs and cats, parents should spend much more for the funerals of their yaosiu defective kids... if they really love them.