By Shannon Lane @shannonroselane
Scroll down for the full story
Videographer / director: Jesse Vogelaar
Producer: Shannon Lane, Ruby Coote
Editor: James Thorne
Lucy Carpenter, 14, and Sammy McCombe, 13, from Melbourne, Australia, have a rare form of albinism.
Lucy told Barcroft TV: “The form of albinism I have is called oculocutaneous albinism, which means that it affects my skin, my hair and my eyes, and it causes a vision impairment. It also makes us very light sensitive and our skin is very sensitive to the sun.”
The mothers of the teenagers immediately noticed something was different about their children as soon as they were born, but only received a diagnoses a few weeks after.
Lucy’s mother, Erin, said: “When she was born she had a shock of white hair like a little grandma, she was just gorgeous and in the hospital she was known as the white headed baby, all the cleaners and everyone wanted to come in the room and have a look at the baby.
"When she was around two months old we went to the ophthalmologist and he looked into her eyes and said that there is no colour and she probably has the most severe form of albinism."
Sammy's mother, Kelli, added: ”We found out when Sammy was six weeks old, I thought something was wrong with her eyes and my husband and I were trying to work out which eye was turning, so she would look at us and one eye would turn, and then the same the other eye was turning and we couldn’t quite work it out.
“We ended up getting into a pediatric ophthalmologist the following day and she looked straight into the eyes of Sammy and said that she had got oculocutaneous albinism and my husband and I looked at each other and we were like, 'oh wonder what that is’ and the she said, 'she is albino'."
The pair first met as just babies, when their mother’s went to a support event for families with children with albinism.
After briefly losing contact, they rekindled their friendship and have been inseparable ever since.
Lucy said: “To have Sammy as a close friend it means a lot to me, it is really nice to have someone to relate to because I know a lot of my other friends don’t quite understand as well what I am going through and it is really funny to be able to talk to Sammy and relate to things.
"Whereas if I try to tell someone else, I will be like 'oh I fell down the stairs' and they will be like 'oh are you okay?' but Sammy would just laugh at me. So it is really nice to have someone that knows exactly what you are going through, and that is just really nice to have her there as a best friend."
Lucy’s mother Erin said: ”It gives them someone to bounce off someone that’s being through the same things that they have been through. Someone that knows what they are all about I don’t have to explain themselves."
Kelli added: “They are 1 in 17,000 people with albinism so it is reasonably rare to find some one in close location you who has albinism and be a similar age and similar interests so that situation is pretty rare but with the social media today it is bringing that community closer too, so it has been great for the girls."
The teenage girls see negatives and positives in their albinism, but have found self confidence through posting photographs on social media.
Sammy said: "Some of the negatives are the vision, it is hard to see things and especially in the distance. I find it hard to look at my friends Instagram photos and they have got their tan and their dark hair, like it is hard to know that I would never look like that.
"But then you look at the positives, I look different but that can be a good thing and I can bring out the positives in that, can show it off instead of kind of hiding behind the condition.
"I like the hair, not so much the skin, I have always had a problem with it. But with the Instagram, if we didn’t have albinism we would still love fashion and everything and photography, but it is just a lot more fun having albinism because it is an excuse for people to get on there and connect with us.”
After posting a few photographs on their joint Instagram account, Sammy and Lucy quickly received attention for their striking looks - and now have over 10,000 followers.
Kelli said: "I thought well this is fun, let’s just stick a couple up and see what happens and then all of a sudden people are interested and contacting us and enjoying it and one thing just led to another and it’s just growing from there and they love it.
"It can get tiring at times, getting clothes on and off, but once the photos go up and everyone saying these beautiful comments and it’s just something that has given confidence .”
Lucy said: “We are kind of like the same person in a way because we are so similar in what we have been through, and that’s really special for us to have someone that you know so well and they know you so well back, it just doesn’t really feel like we are friends, it feels like we are sisters.”
Sammy added: "Yeah we are not perfect, we have our ups and downs and we argue and debate over everything, and we are different people but at the end of the day that doesn’t matter because we are still friends.”