SAMMY: We are different people, we like different things but we look like similar and that’s kind of, a plus for us.
SAMMY: I am Sammy and I am 13. LUCY: I am Lucy. I am 14, almost 15.
ERIN: Lucy and Sammy are both born with albinism.
LUCY: So albinism is a genetic condition that you are born with. There’s two types,
it can either affect the pigment in just your eyes or in your skin, hair and your
eyes. And the form of albinism I have is called Oculocutaneous albinism, which
means that it affects my skin, my hair and my eyes and it also makes us very light
sensitive and our skin is very sensitive to the sun.
ERIN: When we had Lucy and she was born she had a shock of white hair like a
little grandma. She was just gorgeous. So when she was probably around 2 months
old, we went to the ophthalmologist and he looked into her eyes and said that
there is no eye colour. She has probably the most severe form of albinism.
KELLI: We find out when Sammy was about 6 weeks old. I thought ‘Something
is wrong with her eyes.’ And the ophthalmologist said, ‘Well, she has got Oculocutaneous albinism,’ and my
husband and I looked at each other and sort of went, ‘ Oh, wonder what that is’ and then she said,
‘She is albino.’
SAMMY: Having albinism some of the negatives are the vision like, it’s hard to
see things and I find it hard to, like, I look at my friends’ Instagram photos and they
have got, like, they are tan and their dark-haired and, like, it’s hard to know that I will
never look like that. But then you look at the positives and it’s like, ‘I look different
but that can be a good thing.’ LUCY: I love the colour of our hair. It’s so
unique and different. It’s just so bright and so vibrant.
KELLI: 1 in 70 people carry the gene then you have a 1 in 4 chance of having a baby
with albinism. So there are 1 in 17,000 people with albinism. So it’s reasonably
rare to find someone in close location to you that has albinism and being similar
age. That’s been great for the girls.
LUCY: To have Sammy as a close friend, it means a lot to me. It’s really funny to be
able to talk to Sammy and relate to things that, to us may be really hilarious because
I know it’s just really obvious. It’s because of our vision, I will be like, ‘Oh, I fell down
the stairs; and they will be like, ‘Are you okay?’ When I am with Sammy, she will
just laugh at me and I am like, ‘Yeah! I know it is funny.’
KELLI: Because they were so involved in the internet and we always thought as
parents that’s their area, that’s the area that they possibly may get into because
they love it. ERIN: Because Lucy would always watch
the YouTube and everything. I am like, ‘Lucy, Instead of watching them why don’t you do something like that?’
KELLI: The first photos we took were almost my favourite. I thought, ‘Wow, this
is fun you know. Let’s just take a couple more and see what happens.’ So it is just kind of grown from there.
LUCY: With the Instagram, it’s a really good time to go out and try on all these
clothes and say, ‘Oh, I like that.’ And then you will be like, ‘Wait, let’s take a picture
of that and post that on my Instagram.’ It makes us really happy that we can raise
awareness for our condition.
ERIN: I was really surprised at first; I had no Instagram and when she first showed
me how people were taking over and they were getting more followers. I was really surprised.
LUCY: We understand each other more than a lot of you know, other best friends
probably would. We just…. sometimes it just feels like we are kind of the same
person in a way because it’s we are so similar in what we have been through.
SAMMY: Yeah, we are not perfect, like, we have our ups and downs and we argue
and debate over everything and yeah we are different people. But at the end of the
day that doesn’t matter because we are still friends.
LUCY: It just doesn’t really feel like we are best friends. It feels like we are kind of,
sisters, you know, it feels like we are really, really connected in a good special bond.