Four-year-old Mariah is a little more unique than most. This is most noticeable in her beautiful snow white hair that attracts loads of attention wherever she goes. People are always curious of her fair hair and complexion.
Mariah understands that she was made special. As well as her fair hair and complexion, Mariah is also vision impaired.
The reason? Mariah has Albinism.
Albinism is an inherited genetic condition that is passed on by both parents. People with Albinism do not produce the melanin pigment responsible for the colour of eyes, skin and hair. This also results in vision impairment.
For Mariah, her biggest challenge in living with Albinism is her vision impairment. Mariah’s parents have always been her eyes and are now teaching their young daughter strategies to help her become more independent:
“Mariah has no depth perception, and can’t see curbs, steps, slopes, ditches, bumps, and edges. This means we have to be her eyes for her, and advise her of these tripping/falling hazards.”
“We are teaching Mariah strategies to help her become more independent, for example looking for colour contrasts in the environment. Mariah will often bend down to feel the ground with her hands, to ascertain whether there is a change in depth. We will soon begin teaching Mariah to use a cane, which will enable her to become more independent.”
Another challenge for this loveable four-year-old is being out in WA’s harsh sun. For people with Albinism, sunburn is a big issue:
“Summer can be a very difficult time, because her outdoor play is limited to the mornings and evenings, when the UV levels are low. If she is exposed to any sun, we must always ensure she is completely covered in clothing and sunscreen, top to tail.
Playing on a bright and sunny day is very uncomfortable for Mariah, as she can’t tolerate glare and bright lighting which normally leaves her stumbling around with her eyes tightly closed. Although winter can be very wet and cold, the cloudy days are Mariah’s favourite for outdoor play, so we spend much more time outdoors during this time.”
But Mariah has learnt to rely on her other senses to help her make her way in the world. She uses her hearing to identify voices and “can smell Daddy” when he comes home by the scent of his cologne.
At Kindy, the teachers and kids make a big effort to help Mariah out: “Her teachers and friends are very good at verbalising ‘Hello Mariah it is Mrs Hunt here’, or ‘Mariah, your friend Hannah is playing in the home corner’ to allow her to find her friends. Mariah’s friends love to grab her hand and help her find toys and tell her how certain things feel.”
VisAbility has also put Mariah and her family in touch with other families with children with Albinism. This gives Mariah the opportunity to play with other children who are just like her.
Mariah’s parents are inspired by the wonderful role models who live with Albinism and achieve their dreams; it’s a reminder that Albinism doesn’t have to mean a limit to Mariah’s potential.
Mariah’s family have a message to share for International Albinism Awareness Day:
“Although someone may have Albinism, it does not define them. Please do not call a person with Albinism, an Albino, as it is only a small part of what makes up that person.”
“When speaking to a person with Albinism, try to get up as close as possible to them and announce yourself so that they know who they are speaking to. Most of all, people with Albinism are just normal people, who happen to stand out, and are doing their best to get by with a disability.”
You can read more about Albinism or visit VisAbility’s Children and Youth Services page for more information about supporting children with disability.