By Shannon Lane @Shannonroselane
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Videographer / Director: Marcus Hessenberg
Producer: Shannon Lane, Ruby Coote
Editor: Thom Johnson
Growing up most teenagers want to blend in with their peers, however for 22-year-old Leo Jonah this was never an option.
Leo from London, UK was born with albinism, a genetic condition characterised by the complete or partial absence of pigment in the skin, hair and eyes.
He told Barcroft TV: "I think when I was younger, I used to say I wish I didn’t have it because it would’ve made a lot of things easier when I was growing up.
“When you’re growing up, everyone is trying to fit in. And naturally I couldn’t fit in. Even if I wanted to try and fit in, it wouldn’t work.
“I couldn’t just walk to the shop without getting into a fight. Every single day I’d get into a fight.”
Albinism is rare, if both parents carry the albinism gene, there is a 1 in 4 chance that their child will have the condition. According to NHS statistics, one in 17,000 people in the UK are affected.
Despite the statistics, Leo’s family hit the headlines in 1997 as his younger sister was the third child born with albinism to the same parents.
He said: “We were the first black family on my street, and then top of that, three of us had albinism."
Leo’s mother, Faith said: "My first was born in 1992. Then it was like one in five million, so it was very rare to have a child with albinism. I was told I couldn’t have more - but I did.
"I was isolated because nobody around me knew what to do, so it was very challenging for us as parents.
"There are all kind of things that people say that are cruel, but you just have to shrug it off and move on, because if you don’t, you get yourself to a depression.
"I knew they picked on him because of his albinism, because knowing that we are black and he is white - children are very cruel.”
Leo added: “Do you know what’s so funny? They used to say ‘why are you trying to be black?’ and then they would say ‘why are you trying to be white?’
"Sometimes it’s quite annoying because you just can’t be invisible, there’s no way you can go and just walk without someone looking at you or staring at you.
"But at the same time, it’s nice."
Growing up with such a striking look, it wasn’t long before Leo was spotted by a modelling agency.
He said: “I think I was always confident growing up, because of my parents, especially my mum.
“In the modelling industry, they now want to see more different people. But also there’s many different brands that just like the generic, beautiful looking people, and I don’t look like that, I look different.
"It’s always going to be holding you back as well as pushing you forward.
"I love it now. I love it. I wouldn’t change it for anything."
To date, Leo has modelled at London Fashion Week, featured in magazines such as Vogue Russia and Hunger magazine, and appeared in music videos for The 1975, Years & Years, Stormzy and Kamille.
In 2017, a portrait of Leo by photographer Andrea Zvadova was picked to be showcased at the UK’s biggest photography exhibition - Portrait of Britain.
And through his modelling and social media exposure, Leo has become a source of support for other people with albinism. In particular, a seven-year-old boy called Matthew.
Like Leo, Matthew from Dagenham, was also born with albinism. Matthew’s father Olasanmi reached out to Leo via Instagram, to help support his shy son.
Due to the reduced amount of melanin in the retina, many people with albinism also suffer from eye problems, such as poor eyesight and nystagmus.
This along with Matthew’s unique appearance has brought along challenges in the classroom, and in the playground.
His father said: “They ask a lot of questions at school, like ‘why are you white?’
“They said to him they didn’t want to play with him. It’s been very challenging.”
Leo regularly speaks with Olasanmi and Matthew, and even went to Matthew's school to discuss with his teachers on how to improve the young boy's school life.
Leo said: “He is just a normal child, he just need a little bit of accommodation.
"Because I’ve actually gone through it myself, I know exactly what someone would need. I feel like it’s my mission, it’s my purpose to make sure other people know this, and to just help as many people as I can.
"I just want them to know that they’re beautiful, through and through and that’s it.
“They are different, but just embrace it.”
You can follow Leo at: https://www.instagram.com/leo_jonah/