A British-Asian family with 15 albino members who say their condition has brought them together are applying to be formally recognized as the world’s biggest albino family.
Pakistani-born Aslam Parvez, 64, and his wife, Shameem, 65, of England, both have white skin due to albinism—and so do all their six children, and some of their siblings, nieces, and nephews.
Albinism is a rare group of genetic disorder that causes the skin, hair, or eyes to have little or no color. Children have a chance of being born with albinism if both of their parents have the condition or both of them carry the gene for albinism, according to Healthline.
Aslam’s brother also has albinism and so do three of his six surviving children. The seventh one who had albinism passed away.
When Aslam was 11, his family moved from Pakistan to the United Kingdom, and later, he and his brother were matched in marriage with Shameem and her sister—both of whom had albinism. However, Shameem’s sister has since passed away.
The family, who live in Coventry, Warwickshire, and Exeter, Devon, in the U.K. said life was tough growing up, due to bullies and discrimination. However, Naseem Akhtar, 42, the oldest child of Aslam and Shameem, said the family are proud of their identity and want to educate people on the condition.
NHS rehabilitation officer Naseem, from Exeter, Devon, said: “Throughout our lives, my family has put up with a lot of bullying and discrimination for the way we look and who we are, as well as having to cope with sight loss.”
Naseem said she and her siblings, all partially sighted, had a challenging childhood.
“As a family, we never fit into the community—we had dog poo on our doorstep, our windows were smashed, and we even once had fireworks pushed through the letterbox,” she said.
Nassem’s siblings—Ghulam, 40, Haider, 38, Muqadas, 36, Musarat, 30, and Mohammed, 27—were all bullied at school and at the mosque, and their house was targeted.
Additionally, as children, the kids would not be invited to birthday parties and they were also the last to be picked for school sports teams because of their sight loss.
“We were constantly rejected from groups—none of us really had any friends,” Naseem recollects. “Even at the mosque, within our own community, people would steal our shoes whenever we took them off to pray. I often walked home barefoot.”
This made Naseem’s self-esteem and confidence plummet, and the family lived in constant terror and shame.
However, now married with three children—Dylan, 11, Oliver, 9, and Grace, 6—Naseem said: “I’m proud of who we are; people will always have things to say, but you don’t have to listen.”
Naseem also applied for the family to get into the Guinness World Records, as she believes they are the biggest family to all have albinism. She wants her family to be marked by history, as she considers it “unique.”
The record is currently jointly held by two families from Canada and the United States, each with four siblings with albinism.
Back in Coventry, all of her siblings also went on to start families of their own.
They drifted apart, but said they grew close again during video calls over lockdown. Being part of such a large family all sharing the same condition has eventually brought them closer together.
Between Naseem and her five siblings, they have 14 children, none of whom have the recessive genetic condition—oculocutaneous albinism (OCA).
She said she is proud of her identity, but glad the next generation of the family doesn’t suffer sight loss, which is caused by an absence of pigment in the eye’s iris.
“Just like any disability, sight loss is not easy to deal with, no matter how optimistic you are,” Naseem said.
The mother of three is very passionate about educating people on this condition so that they can understand what it is and also see the impact it can have on the people whose lives have been affected.
“I’ve always tried to promote positivity about albinism—even though we look very different and can’t see, doesn’t mean we’re less of a person or don’t have the right to have a good life,” Naseem said. “After so many years of being put down and feeling like you don’t fit in anywhere, it has a huge impact, but you have to learn to overcome negativity.”
Embracing albinism, Nassem says that her family can’t change who they are, but at least they can see the condition as a “gift.”
“We have been through a lot of bad experiences but we need to put the past behind us and ultimately we have come out as a family, stronger than ever,” she said.
“I want people to know that even if you don’t fit in in the world, you are still important and can leave your mark on the world—and never lose hope.”
Epoch Inspired Staff contributed to this report.