00:00We were on Born Different for being besties with albinism.
00:03Seven years on, we're still thriving.
00:05I moved to Melbourne almost two and a half years ago.
00:09It was my first time living out of home, away from my parents.
00:13I have a wonderful black Labrador guide dog named Dottie, who I've had for four years now.
00:20And she has helped me navigate the world independently with a lot more confidence.
00:25Dottie helps me in so many ways as my guide dog.
00:28She's a really big help when I'm out and about because I don't have to do a lot of the
00:32work with my remaining vision.
00:35When I was a cane user, it was very exhausting and often very overwhelming.
00:40I was using a lot of my remaining vision and energy to try to navigate safely with my cane.
00:46And now having Dottie, I don't have to worry about that.
00:50So albinism is a genetic condition that you're born with.
00:54There's two types. It can either affect the pigment in just your eyes or in your skin, hair and your
00:59eyes.
00:59Having albinism, some of the negatives are the vision, like it's hard to see things.
01:05I do have some functional vision.
01:07I often describe my vision as an abstract painting.
01:11There is some image there.
01:13There are colours, there are shapes, there are shadows.
01:15But quite often, I can't actually make out the image unless I focus really hard and expend a lot of
01:22energy.
01:23Having low vision is a part of having albinism.
01:26For me, that is kind of hard to explain what my vision's like because I was born with it.
01:32Although I really do like Lucy's analogy about the abstract artwork we first shot with Trolley seven years ago.
01:38Since then, I've graduated secondary school.
01:41I've done three years of university and I've started working full time.
01:45So a lot has changed in my life as well as moving out of home as well.
01:49So I found occupational therapy really, really helpful just in that transition phase.
01:54I've also had occupational therapy sessions.
01:57So for me, that mainly consists of learning how to cook independently, do daily household chores such as cleaning, washing,
02:05all the things that might come quite second nature to a lot of people.
02:09But when you have low vision, it can actually be a bit more difficult and you have to find different
02:14ways to do things.
02:16Having oculocutaneous albinism, we're at an increased risk of skin cancer.
02:20So we really need to protect our skin from the sun.
02:23For me, that comes in the shape of seeing a dermatologist every 12 months and look after our skin.
02:30I'm currently studying full time at university and I'm working as a receptionist in allied health as well.
02:38Over the past few years, I've had the privilege of mentoring a little girl with albinism, same exact type as
02:44myself.
02:45It's been really quite beautiful for me.
02:47I feel as though I'm doing for her what Lucy did for me all those years ago.
02:53So it's quite nice in that way to feel like I'm sort of passing that on to someone else.
02:58I completed a Bachelor of Professional Communication three years ago now.
03:03And since graduating, I have been working in the not-for-profit disability space.
03:08I currently work full time across two different roles.
03:12One of my roles is at Guide Dogs Victoria, which is the organisation that I have got my incredible guide
03:19dog, Dottie, from.
03:20And my other role is a content writer with Seaway, which is an initiative from Guide Dogs Australia.
03:26So still connected to the Guide Dogs brand.
03:29It's really rewarding for me to work in the low vision and blindness space and feel like I'm giving back
03:34to my community.
03:35I also volunteer on the National Committee for the Albinism Fellowship of Australia, which is a national organisation that supports
03:42people with albinism.
03:44Sammy's mum and my mum were actually connected through the Albinism Fellowship of Australia when Sammy was young.
03:50Find someone in close location to you that has albinism and being a similar age.
03:55That's been great for girls.
03:57To have Sammy as a close friend, it means a lot to me.
04:00It's really funny to be able to talk to Sammy and relate to things.
04:05We understand each other more than a lot of, you know, other best friends probably would.
04:13We just, it's, sometimes it just feels like we're kind of like the same person in a way because it's,
04:22we're so similar in what we've been through.
04:25So it's really nice that we have remained connected for all this time.
04:30When I was first diagnosed with albinism, my parents were quite lost.
04:34They didn't really understand it and they didn't have any connections to people with albinism.
04:38So being connected to people such as Lucy through the fellowship really helped them to navigate the journey.
04:46There's not much awareness around albinism.
04:48So it was really, really important.
04:50And I know it really, really helped my mum to see almost a success story in Lucy, really.
04:57She was years ahead of me in age and she had already been through the things that I was trying
05:01to navigate.
05:03Albinism is a genetic condition and it's usually inherited by a gene from both the parents.
05:09However, there are some types that only require a gene from one of the parents.
05:13Lucy and I both have oculocutaneous albinism.
05:16And with that specific type of albinism, both parents need to be carriers of the gene for the child to
05:22be born with albinism.
05:24One in 70 people approximately have the gene.
05:27This means that if our partner carries the albinism gene, our children will have a 50% chance of having
05:34albinism
05:34and a 50% chance of being a carrier for albinism.
05:37And if our partner doesn't carry the gene, then our children will have a 100% chance of being a
05:43carrier of albinism, but will not have albinism.
05:45I personally really do want to have kids one day.
05:49And if they were to have albinism, I don't think I'd be too upset.
05:53It'd be a little bit tricky to navigate at the start, especially trying to work out what level of vision
05:58they have
05:58and all the complicated things that come with that.
06:02But I think I'd just embrace it.
06:04And at the end of the day, if anyone's going to be a good parent to a kid with albinism,
06:09it's going to be someone who's living with the conditions.
06:11I've told my mum that she's only getting first children for the foreseeable future.
06:15So I know that one day, if that's something that I'm looking to do with my life,
06:21even if that child has albinism, I know that they can still live a really fulfilling life
06:26and I'll be able to support them knowing what they're going through.
06:31About a year after filming with Truly seven years ago, I met my amazing partner, Ryan.
06:37He's very, very supportive.
06:39Currently, we're living with three lambs.
06:42Whilst Lucy and I live a little bit further apart now, we're still very close
06:46and she's still always my first point of call when I have any questions, albinism related or not.
06:52It just doesn't really feel like we're best friends.
06:54It feels like we're kind of sisters or, you know, it feels like we're really, really connected.
07:01The great thing about being connected through something like albinism is that Sammy and I will always have this special
07:07bond with each other
07:08and we'll always be able to go to each other with unique questions or challenges that nobody else understands.
07:15We want to continue sharing with younger people with albinism that their albinism is what makes them unique and beautiful
07:22and they may look a bit different and they may do things a little bit differently because of their vision
07:26but that is the beauty of being unique and being your own person.
07:31There might be setbacks but you can achieve anything and in most cases, having a disability is only as limiting
07:37as you make it.
07:59Thank you so much for listening.
07:59You
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