In May 2021, a British family officially received the Guinness World Records title for most siblings with albinism.
The Coventry family counts six siblings affected by the genetic condition: Naseem Akhtar, Ghulam Ali, Haider Ali, Muqadas Bibi, Musarat Begum and the youngest, Mohammed Rafi.
"Achieving a Guinness World Records is amazing. Finally, that uniqueness that we were born with and perhaps our story will inspire others." - Naseem Akhtar
"I'm Naseem Akhtar, and this is my family", says Naseem – who works as an NHS rehabilitation officer, the "mother figure" of this close-knit clan.
She "is the clever one", her siblings say.
With a proud smile, Naseem introduced us to her brothers and sisters:
"This is Rafi, the youngest and the cheekiest one. This is Musarat, the organised one. This is Muqagas, and she’s a perfectionist. This is Haider: he's the peacemaker. And this is Ghulam, the funny one." – Naseem
They are proud of themselves and of their tight relationship, and work extensively to educate people on the condition.
"One blessing was that our albinism made us closer than other siblings because we all shared something different, very unique."
All the siblings are affected by albinism, a genetic condition involving the production of melanin, which they inherited from their parents, Pakistani-born couple Aslam Parvez and Shameem Akhtar.
Melanin is a chemical in the body that determines the colour of skin, hair and eyes. The chemical is also involved in the development of the optical nerve, which may signify impaired eyesight.
When asked about her genetic condition and how it presents, Naseem clarifies:
"Albinism affects the eyes, the skin and the colour in your hair. It’s a lack of pigment which you are born without. There's a gene that goes faulty and, hence, you have the condition."
"It's a condition that both parents have to carry for it to present in the offspring."
As explained by Ghulam Ali, during their childhood and school years, the siblings all faced bullying and stigma.
"During school and college, when we were quite young, we always sort of kept to ourselves together. We did experience being bullied or being sworn at."
However, they confronted the hate and ignorance by educating others and sticking together as one, finding support and love in the family.
"People bully because they are uneducated and we actually tried to educate them." - Ghulam
As the youngest brother, Rafi, recounts, the six siblings also helped each other due to their impaired eyesight.
"Our sight is not as good, but we always knew that if we stand together no one can do us harm."
Through the difficulties, the siblings could always count on the safe harbour represented by their older sister, Naseem.
"As siblings, we all supported each other," Naseem recalls.
"I was the eldest and very much like the mother figure. For me, I had no role model to follow: so I was the role model for them.
"I supported them, and they supported me by being the same as me. We were all a team."
Today, surrounded by an expanding family but always with her beloved team by her side, Naseem has grown to like her condition and who she has become as a person.
"Over time, I have now come to like my condition because it makes me very unique. Being Asian but being white, it gives me a unique outlook on life, it gives me a very unbiased opinion of society and humanity."
"I like who I am, and the human being I became."
When asked about what he likes about the condition now, the youngest brother Rafi replies:
"What I like about the condition is that you get noticed a lot."
People compliment his eyes, especially their unique shade and their ability to change colour.
"You stand out slightly from others. My eyes change colour, they go red, they go blue, they go purple or they go pink, so there are four colours!" - Rafi
This is due to the lack of pigment in the irises, which makes them somewhat translucent and allows the eyes to change colour under different lights.
"My parents had six children with the condition. However, the youngest generation of our family doesn’t have it," explains Rafi. "My son, my niece and nephew do not have the condition."
Muqadas Bibi's daughter, for example, is part of the younger generation who did not inherit the genetic condition.
"She is pretty," the young girl says while describing her mother.
"My friends do ask questions about my mum, and they say she looks very beautiful and pretty and different. They just compliment her."
The family reunited during the pandemic.
To celebrate, mother-of-three Naseem decided to apply for the most siblings with albinism record title.
"I always believed something good would happen," she says. "Maybe being Guinness World Records title holders is that good thing."
Naseem hopes that the story of her family - their very own journey of growth, acceptance and uniqueness - can inspire people.
"Go and get your dream and be amazing, because we are all amazing. It doesn’t matter if you have a disability or are able-bodied or who you are, just be you. Be proud of yourself, and love yourself for who you are. Find who you are."
According to Naseem, a Guinness World Records title granted her family that stamp, that self-esteem, that she always wanted for her siblings.
"Even though we had all these struggles in life, we can still be amazing."