WEBVTT
Kind: captions
Language: en

00:00:00.640 --> 00:00:02.310 
on<00:00:00.760> the<00:00:00.919> day<00:00:01.079> of<00:00:01.240> her<00:00:01.400> second<00:00:01.719> birthday<00:00:02.159> we

00:00:02.310 --> 00:00:02.320 
on the day of her second birthday we
 
00:00:02.320 --> 00:00:04.309 
on the day of her second birthday we
literally<00:00:02.760> drove<00:00:03.080> to<00:00:03.240> Columbia<00:00:03.879> to<00:00:04.040> get<00:00:04.160> her

00:00:04.309 --> 00:00:04.319 
literally drove to Columbia to get her

00:00:04.319 --> 00:00:07.710 
literally drove to Columbia to get her
screened<00:00:05.080> for<00:00:05.560> the<00:00:05.720> Ionis<00:00:06.279> Nusinersen<00:00:06.960> trial

00:00:07.710 --> 00:00:07.720 
screened for the Ionis Nusinersen trial
 
00:00:07.720 --> 00:00:09.190 
screened for the Ionis Nusinersen trial
then<00:00:07.919> 3<00:00:08.120> weeks<00:00:08.320> later<00:00:08.519> she<00:00:08.639> got<00:00:08.800> her<00:00:08.960> first

00:00:09.190 --> 00:00:09.200 
then 3 weeks later she got her first
 
00:00:09.200 --> 00:00:10.790 
then 3 weeks later she got her first
injection<00:00:09.800> and<00:00:09.920> we<00:00:10.040> started<00:00:10.360> noticing

00:00:10.790 --> 00:00:10.800 
injection and we started noticing
 
00:00:10.800 --> 00:00:13.509 
injection and we started noticing
changes<00:00:11.160> in<00:00:11.360> her<00:00:12.000> around<00:00:12.200> the<00:00:12.320> 2-month<00:00:12.799> mark

00:00:13.509 --> 00:00:13.519 
changes in her around the 2-month mark
 
00:00:13.519 --> 00:00:15.430 
changes in her around the 2-month mark
she<00:00:13.799> crawled<00:00:14.360> all<00:00:14.519> the<00:00:14.639> way<00:00:14.799> from<00:00:14.960> the<00:00:15.120> living

00:00:15.430 --> 00:00:15.440 
she crawled all the way from the living
 
00:00:15.440 --> 00:00:17.990 
she crawled all the way from the living
room<00:00:16.000> to<00:00:16.199> our<00:00:16.400> master<00:00:16.720> bedroom<00:00:17.560> and<00:00:17.680> we<00:00:17.760> were

00:00:17.990 --> 00:00:18.000 
room to our master bedroom and we were
 
00:00:18.000 --> 00:00:20.910 
room to our master bedroom and we were
just<00:00:18.119> in<00:00:18.320> shock<00:00:18.840> she<00:00:19.080> now<00:00:19.480> stands<00:00:20.480> we<00:00:20.640> have

00:00:20.910 --> 00:00:20.920 
just in shock she now stands we have
 
00:00:20.920 --> 00:00:23.429 
just in shock she now stands we have
little<00:00:21.199> Orthotics<00:00:22.039> that<00:00:22.199> help<00:00:22.439> her<00:00:22.760> now<00:00:23.279> with

00:00:23.429 --> 00:00:23.439 
little Orthotics that help her now with
 
00:00:23.439 --> 00:00:25.670 
little Orthotics that help her now with
a<00:00:23.599> walker<00:00:24.599> and<00:00:24.720> we<00:00:24.840> just<00:00:25.000> started<00:00:25.359> her<00:00:25.519> with

00:00:25.670 --> 00:00:25.680 
a walker and we just started her with
 
00:00:25.680 --> 00:00:27.589 
a walker and we just started her with
crutches<00:00:26.359> not<00:00:26.480> only<00:00:26.760> that<00:00:26.920> the<00:00:27.080> disease<00:00:27.439> has

00:00:27.589 --> 00:00:27.599 
crutches not only that the disease has
 
00:00:27.599 --> 00:00:30.550 
crutches not only that the disease has
stopped<00:00:27.920> progression<00:00:28.880> she's<00:00:29.199> no<00:00:29.439> longer<00:00:30.119> lost

00:00:30.550 --> 00:00:30.560 
stopped progression she's no longer lost
 
00:00:30.560 --> 00:00:32.950 
stopped progression she's no longer lost
anything<00:00:31.480> in<00:00:31.640> fact<00:00:32.079> every<00:00:32.320> time<00:00:32.520> she<00:00:32.680> goes<00:00:32.840> in

00:00:32.950 --> 00:00:32.960 
anything in fact every time she goes in
 
00:00:32.960 --> 00:00:34.950 
anything in fact every time she goes in
for<00:00:33.120> another<00:00:33.399> injection<00:00:33.800> she<00:00:33.960> gets<00:00:34.200> a<00:00:34.280> little

00:00:34.950 --> 00:00:34.960 
for another injection she gets a little
 
00:00:34.960 --> 00:00:37.310 
for another injection she gets a little
stronger<00:00:35.960> as<00:00:36.040> soon<00:00:36.200> as<00:00:36.320> we<00:00:36.440> found<00:00:36.680> out<00:00:37.040> that

00:00:37.310 --> 00:00:37.320 
stronger as soon as we found out that
 
00:00:37.320 --> 00:00:38.990 
stronger as soon as we found out that
the<00:00:37.600> drug<00:00:37.960> trial<00:00:38.280> that<00:00:38.399> we<00:00:38.480> were<00:00:38.640> interested

00:00:38.990 --> 00:00:39.000 
the drug trial that we were interested
 
00:00:39.000 --> 00:00:41.590 
the drug trial that we were interested
in<00:00:39.360> was<00:00:39.640> actually<00:00:40.559> discovered<00:00:40.920> here<00:00:41.200> at<00:00:41.360> Cold

00:00:41.590 --> 00:00:41.600 
in was actually discovered here at Cold
 
00:00:41.600 --> 00:00:44.029 
in was actually discovered here at Cold
Spring<00:00:41.760> Harbor<00:00:42.079> Labs<00:00:42.520> we<00:00:42.680> had<00:00:42.800> to<00:00:43.079> come<00:00:43.280> down

00:00:44.029 --> 00:00:44.039 
Cold Spring Harbor Labs we had to come down
 
00:00:44.039 --> 00:00:46.910 
Cold Spring Harbor Labs we had to come down
for<00:00:44.200> me<00:00:44.520> Dr.<00:00:44.800> Krainer<00:00:45.320> is<00:00:45.680> a<00:00:45.840> superhero<00:00:46.719> in

00:00:46.910 --> 00:00:46.920 
for me Dr. Krainer is a superhero in
 
00:00:46.920 --> 00:00:49.189 
for me Dr. Krainer is a superhero in
regular<00:00:47.320> clothing<00:00:48.000> once<00:00:48.160> you<00:00:48.360> get<00:00:48.559> inside<00:00:49.039> and

00:00:49.189 --> 00:00:49.199 
regular clothing once you get inside and
 
00:00:49.199 --> 00:00:52.389 
regular clothing once you get inside and
you<00:00:49.399> see<00:00:50.160> what<00:00:50.360> goes<00:00:50.600> on<00:00:51.079> here<00:00:52.079> this<00:00:52.199> is

00:00:52.389 --> 00:00:52.399 
you see what goes on here this is
 
00:00:52.399 --> 00:00:54.630 
you see what goes on here this is
groundbreaking<00:00:53.120> stuff<00:00:53.879> this<00:00:54.039> is<00:00:54.239> affecting

00:00:54.630 --> 00:00:54.640 
groundbreaking stuff this is affecting
 
00:00:54.640 --> 00:00:57.110 
groundbreaking stuff this is affecting
everyone<00:00:55.000> across<00:00:55.320> the<00:00:55.440> world<00:00:56.440> without<00:00:56.800> basic

00:00:57.110 --> 00:00:57.120 
everyone across the world without basic
 
00:00:57.120 --> 00:00:59.349 
everyone across the world without basic
research<00:00:57.640> there<00:00:57.760> would<00:00:57.879> be<00:00:58.039> no<00:00:58.239> hope<00:00:58.519> for<00:00:59.120> my

00:00:59.349 --> 00:00:59.359 
research there would be no hope for my
 
00:00:59.359 --> 00:01:01.590 
research there would be no hope for my
child<00:01:00.399> so<00:01:00.640> we're<00:01:00.840> very<00:01:01.000> hopeful<00:01:01.359> for<00:01:01.480> the

00:01:01.590 --> 00:01:01.600 
child so we're very hopeful for the
 
00:01:01.600 --> 00:01:04.000 
child so we're very hopeful for the
future<00:01:01.920> for<00:01:02.039> the<00:01:02.199> first time