Mom Shares How She Helps ‘Fighter’ Daughter With Albinism Tackle Stigma

0
23

When Megan McMorris, 41 an interior designer from Denver, found out that her daughter Louise, now 9, was born with albinism, she was “devastated.”

“Myself and my husband had so many thoughts running through our minds,” she told Newsweek.

“We didn’t know anything about it and everything we saw online definitely didn’t make us feel any better,” McMorris continued, We had so many questions and concerns. ‘Will she be able to drive?’ ‘Will other kids make fun of her?’ ‘How did this happen?’ At that point, I had been with my husband for many years , but that was the first time I saw him cry.”

Albinism affects people from all races, and approximately one in 17,000 people are born with the genetic condition which reduces the amount of pigment in the skin hair and eyes.

Louise was born with Oculocutaneous Albinism (OCA) which “affects the color of the eyes, hair, and skin, and has four different types depending on the related gene problem,” according to the American Association for Pediatric Ophthalmology and Strabismus (AAPOS).

Louise McMorris, nine years old, was born with OCA1A Albinism and nystagmus, an involuntary eye movement which may cause the eye to rapidly move from side to side, up and down, or in a circle.
Megan McMorris

The second type of albinism is Ocular Albinism (OA) which “mainly affects the eyes, with normal or near-normal skin and hair color,” added the AAPOS.

Louise also has nystagmus, shown in the video above, a condition that means her light blue eyes involuntarily move rapidly from side to side, up and down or in circular movements.

“When she was a baby I remember feeling sad because she would never make eye contact with me, that was one of the hardest things,” said McMorris.

Nystagmus can reduce vision, and albinism brings other certain challenges. “I’ll always worry,” said McMorris, “about her crossing a street, going down unfamiliar stairs, getting lost and not being able to navigate because of signs being too far away, other people making fun of her, not being able to drive a car or play certain sports, and getting a sunburn.”

McMorris added that adults and children often stare at Louise’s white hair, “and there was one time in daycare where a boy called her ‘crazy eyes’ because of her nystagmus, but apart from that we are lucky that most people just accept her for who she is.”

People with albinism face a range of discrimination globally, and it is still a widely misunderstood and stigmatized condition.

“The physical appearance of persons with albinism is often the object of erroneous beliefs and myths influenced by superstition, which foster their marginalization and social exclusion,” reports the United Nations (U.N). “This leads to various forms of stigma and discrimination.”

The U.N. continues: “the manner in which discrimination faced by persons with albinism manifests itself, and its severity, vary from region to region. In the western world, including North America, Europe and Australia, discrimination often consists of name-calling, persistent teasing and bullying of children with albinism.”

In the past decade, there have been hundreds of cases of attacks and killings of people with albinism in 28 countries in Sub-Saharan Africa, the U.N. says.

“The attacks have several root causes including ignorance, longstanding stigma, poverty and most abhorrently, harmful practices emanating from manifestation of beliefs in witchcraft,” it reports. “The alarming reality is that these horrendous practices continue today.”

“What happens in other parts of the world to people who have albinism is just horrific,” McMorris said. “It’s hard to stomach. People who have albinism are already going through their own challenges, and to throw harassment, brutalization and murder into the mix because of beliefs about witchcraft, is unfathomable.”

McMorris has yet to tell Louise about global attitudes toward albinism, she firmly believes that being open and proud is the best attitude.

“From the very beginning, I told myself that albinism is not something we want to hide or brush under the rug,” she said. “We’ve always talked openly about it and reiterate that she can do anything that she puts her mind to. Albinism is a beautiful thing and not something we’re ashamed of.”

Despite supportive parents, Louise still recognizes she’s different from many other children.

“When she’s upset or frustrated, she’ll sometimes say ‘I don’t want albinism!’ But then, when she comes around, she realizes she has an amazing platform we’ve built for her through social media and she wants to be a role model for other young girls or boys who are also navigating life with albinism. Yes there are challenges, but Louise is a fighter and can usually adapt to any situation she’s in.”

Newsweek’s “What Should I Do?” offers expert advice to readers. If you have a personal dilemma, let us know via [email protected]. We can ask experts for advice on relationships, family, friends, money and work and your story could be featured on WSID at Newsweek.