Dinakar Singh

Every year she got weaker until the drugs came along.

And that's the progression typically would be kids get weaker, stuff starts falling apart like your spine and you need spinal fusions.

And that means your spine is constricted.

You can't grow.

That creates lung damage.

And then you start getting pneumonia and all sorts of stuff.

And so you end up, I mean, in the old days, you have enormous deformities with children.

And like many degenerative diseases,

ALS, Parkinson's, even Alzheimer's.

No one dies of SMA.

It just makes you really weak and then something gets you, whether it's association or it's choking or it's pneumonia, more often than not.

Val Kilmer just yesterday of pneumonia, but pneumonia was really just a side effect of throat cancer.

In her case, our goal was to manically keep her strong as possible until the drugs can come along.

And so physical therapists coming to see her every day.

We built a pool in our apartment building for her because you need warm water and it's a special therapy pool.

But that was important because when you're a person who's weak, part of the problem is it's circular.

You're weak, you can't exercise and stretch your muscles and bones.

So they keep getting weaker and weaker on top of the original problem in the first place.

And that creates this devastating cycle.

And so here between diet, between exercise, between therapy, the goal was to go and keep her as strong as possible to hold off that damage from all these things.