1
00:00:14,206 --> 00:00:17,194
Does it help to talk
to others?

2
00:00:19,124 --> 00:00:21,460
I do find it helps
more and more.

3
00:00:21,652 --> 00:00:23,210
To being with I was
very isolated

4
00:00:23,422 --> 00:00:25,065
and then as it went on

5
00:00:25,324 --> 00:00:26,855
that support network

6
00:00:27,026 --> 00:00:28,607
become a lifeline.

7
00:00:28,773 --> 00:00:31,177
Questions I had about
Ruby's care often the

8
00:00:31,337 --> 00:00:33,746
doctors and nurses didn't
really know, or were

9
00:00:33,913 --> 00:00:35,380
stumbling their way through

10
00:00:35,537 --> 00:00:37,918
because they hadn't seen cases
of Sandhoff before.

11
00:00:38,109 --> 00:00:40,134
When I turned to them for help

12
00:00:40,295 --> 00:00:42,933
they were the experts.

13
00:00:46,395 --> 00:00:48,552
Absolutely.

14
00:00:48,743 --> 00:00:50,801
100%

15
00:00:51,023 --> 00:00:52,968
I think it does help to talk

16
00:00:53,078 --> 00:00:54,525
to others in a similar position

17
00:00:54,560 --> 00:00:56,528
because they can really understand

18
00:00:56,558 --> 00:00:58,127
what you are going through.

19
00:00:58,127 --> 00:01:00,216
I think with friends and family

20
00:01:00,216 --> 00:01:01,761
sometimes they try

21
00:01:01,761 --> 00:01:03,662
to understand.

22
00:01:03,830 --> 00:01:05,434
But, because they are not living

23
00:01:05,591 --> 00:01:06,676
it day to day, 24 hours a day they

24
00:01:06,847 --> 00:01:08,708
really can struggle with the small

25
00:01:08,708 --> 00:01:10,478
things you find very difficult.

26
00:01:10,478 --> 00:01:12,525
So, that's why we turn to the people

27
00:01:12,694 --> 00:01:15,267
and friends who we have made in

28
00:01:15,267 --> 00:01:17,236
the Tay-Sachs community through

29
00:01:17,236 --> 00:01:19,126
The CATS Foundation.

30
00:01:19,126 --> 00:01:21,344
They are people we can really

31
00:01:21,344 --> 00:01:23,366
rely on for support and advice

32
00:01:23,366 --> 00:01:25,901
and basically we can talk to them
about anything and

33
00:01:25,901 --> 00:01:27,310
they don't really mind.

34
00:01:27,310 --> 00:01:30,398
I often speak to a lot of

35
00:01:30,792 --> 00:01:32,319
the parents from the
Tay-Sachs community.

36
00:01:32,475 --> 00:01:33,802
I don't speak to all of them

37
00:01:33,917 --> 00:01:35,622
and I do think that within
that community

38
00:01:35,750 --> 00:01:37,127
you find the ones that become

39
00:01:37,287 --> 00:01:40,381
you friends that are closer 
to you because

40
00:01:40,541 --> 00:01:43,310
of how you are and how you
are dealing with the situation.

41
00:01:43,462 --> 00:01:46,706
That makes it into a very
normal relationship and

42
00:01:46,930 --> 00:01:49,596
a normal friendship.


43
00:01:49,755 --> 00:01:51,684
But, where you can talk about

44
00:01:51,847 --> 00:01:53,030
things that the parents don't

45
00:01:53,200 --> 00:01:55,505
particularly know or want to hear about.

46
00:01:55,666 --> 00:02:02,068
It's a very big support to have on 
the end of an email or message

47
00:02:02,200 --> 00:02:04,889
or phone call and to be able to do
things together.

48
00:02:05,083 --> 00:02:08,968
It's very important that you 
don't feel isolated.

49
00:02:09,125 --> 00:02:15,130
For any one that has just been
diagnosed it's really important

50
00:02:15,227 --> 00:02:16,901
to find your friends within
the community.

51
00:02:20,270 --> 00:02:23,001
Yes, very much.

52
00:02:25,221 --> 00:02:30,065
It helps to talk to other people
in the same situation as us.

53
00:02:30,480 --> 00:02:36,654
There are members of family 
and close friends

54
00:02:36,879 --> 00:02:39,288
who we are able to talk to.

55
00:02:39,545 --> 00:02:42,058
But, I think our biggest help

56
00:02:42,217 --> 00:02:44,405
is from our close family within

57
00:02:44,516 --> 00:02:46,905
our Tay-Sachs family.

58
00:02:46,954 --> 00:02:48,809
I think it also helps to

59
00:02:49,001 --> 00:02:51,030
share our knowledge
and experiences

60
00:02:51,190 --> 00:02:53,532
with new families as well.

61
00:02:53,693 --> 00:02:55,783
Things that worked for us
in the early days

62
00:02:55,783 --> 00:03:00,027
and didn't work for us.