Stephen Lannen

Nelly, are you okay?

Like every 60 seconds or 90 seconds.

I'm like a parrot.

Are you okay?

Are you okay?

Because you can't tell.

She could be coughing and choking on the other side of the room.

You won't know.

Like how do you manage it?

Yeah, we suction her all the time.

So instead of being able to swallow, we just have a suction machine that she takes.

She would take two suction machines and a charger to school with her.

Every time we leave the house, we take BiPAP with us when we leave the house as well.

Yeah.

If Nellie had got that drug at a month old, the difference in her life today, like she has really bad scoliosis, just everything completely changes for these children.

I don't know what the result is if a child gets the drug at a month, but as soon as Nellie got the drug, she got it about two years old and she got stronger, fewer infections.

She was able to manage the infections better, fewer intubations.

you know, but that was at two.

She got it at a month old and she was already quite strong at that time.

She hadn't lost all her motor neurons.