1
00:00:01,180 --> 00:00:03,530
I thought that I knew what desperation 

2
00:00:03,530 --> 00:00:06,140
was before Aubrey was sick , 

3
00:00:07,750 --> 00:00:10,370
there were no signs of anything wrong . 

4
00:00:11,490 --> 00:00:13,680
Up until about 2.5 years , 

5
00:00:15,470 --> 00:00:17,850
We thought she was like playing around . 

6
00:00:17,850 --> 00:00:19,961
Like when we picked her up , she just 

7
00:00:19,961 --> 00:00:22,183
kind of let her arms hang , she'd never 

8
00:00:22,183 --> 00:00:24,183
really grab on and I thought it was 

9
00:00:24,183 --> 00:00:24,140
like a game that she played like , oh 

10
00:00:24,140 --> 00:00:26,084
you finally picked me up now , I'm 

11
00:00:26,084 --> 00:00:28,307
gonna relax . But then after a while we 

12
00:00:28,307 --> 00:00:30,529
started noticing it wasn't going away . 

13
00:00:30,529 --> 00:00:33,680
There's 30 known cases of reducing body 

14
00:00:33,680 --> 00:00:36,040
myopathy , all of medical literature , 

15
00:00:36,070 --> 00:00:39,630
it's considered ultra rare . Aubrey's 

16
00:00:39,630 --> 00:00:41,940
losing muscle every single day . She 

17
00:00:41,940 --> 00:00:44,310
wakes up a little bit weaker without a 

18
00:00:44,310 --> 00:00:48,060
cure . That's , that's gonna become 

19
00:00:48,060 --> 00:00:49,504
hard for her to breathe . 

20
00:00:52,640 --> 00:00:54,960
I think for me , the hardest thing is 

21
00:00:55,610 --> 00:00:59,350
she doesn't know like she , she thinks 

22
00:00:59,360 --> 00:01:03,270
that she's just little and she'll be 

23
00:01:03,270 --> 00:01:06,390
like her brothers , someone she talks 

24
00:01:06,390 --> 00:01:09,450
about when I grow up for . 

25
00:01:15,560 --> 00:01:18,890
Yeah , we started the 

26
00:01:18,900 --> 00:01:21,670
nonprofit , the Sullivan Foundation 

27
00:01:21,670 --> 00:01:24,680
with the goal to accelerate the 

28
00:01:24,680 --> 00:01:27,440
research and development of a cure . We 

29
00:01:27,440 --> 00:01:29,580
have the Foundation's website that 

30
00:01:29,580 --> 00:01:33,260
secure our BM dot org . Um , there's 

31
00:01:33,260 --> 00:01:35,630
point of contact information , so it's 

32
00:01:35,630 --> 00:01:38,350
got a lot of awareness places to donate . 

33
00:01:38,360 --> 00:01:41,880
But most importantly the contact , it's 

34
00:01:41,880 --> 00:01:44,400
hard to fight for a cure alone and 

35
00:01:44,400 --> 00:01:46,890
we're really hoping that we could have 

36
00:01:46,900 --> 00:01:49,670
some community support here at scott