Dinakar Singh
speaker
519 appearances
1 recordings
1 series
first heard Jun 2025
last heard Jun 2025
Dinakar Singh’s voice in public audio — every appearance, attributed to the second.
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Appearances
I'll read you that quickly.
Speak to it.
I did.
Please.
Most people probably never heard of SMA.
We certainly hadn't.
And we're horrified by what you learned.
It's the most common genetic killer of infants, and it's untreatable, incurable, and eventually fatal.
It's described as a children's version of ALS or a genetic version of polio.
Simply put, motor neurons die, muscles break down, leading to eventually fatal complications.
In most cases, it has to make kills in the first two years of life.
In less severe cases, such as our daughters, depression can take many years.
So as the mind grows, the body steadily weakens and eventually betrays it.
Obviously, we were devastated and shattered.
And over the past year, our hearts have broken every day as we've watched her become irresistibly adorable and learn to sing, tell jokes, talk endlessly, but also lose the ability to stand up, the ability to crawl, let alone walk, the ability to even sit up by herself.
And yet, three realizations have helped us slowly face the future.
First, we've truly learned and appreciated the importance of friends and community.
The comfort and love of friends has been a source of incredible strength for us.
And meeting other parents with issues and learning from them and the incredible challenges many of them deal with has been an incredible source of inspiration for us.
We've realized that there are no good diseases, but there are many, many strong people, and their courage is truly infectious, far more than any disease.
Showing 381–400 of 519 · page 20 of 26
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