All About Albinism

Our Story

Our son was born full-term via emergency c-section. He took the fancy of most hospital staff who could not get over just how light his hair was. As my husband and I are both blonde and my husband was white haired as a young child we didn’t think any further about it. We did notice that our son’s eyes would glow at certain times but he was our first child so we thought it was just some weird newborn thing.

At his 6 week child-health check, the nurse expressed some concern with his vision and referred us to a specialist for investigation. We went along thinking it would be nothing and we would go on as before, but that was not to be. The specialist looked at our 11 week old cherubic baby boy and said he knew exactly what was wrong with him.

He said he had albinism, that he would have a vision impairment that would result in him never being able to drive and that we would have to take all possible measures to protect his skin from the harsh Australian sun.

I remember asking him whether he would have ‘red’ eyes (they were and still remain a lovely blue) and he told me that was a myth – the first of many myths about albinism that I would encounter. I managed to keep it together as we settled the account and organized the first of many ongoing return appointments but I lost it completely when we got to the car.

My uppermost concern? That my boy would never be able to drive a car. I mean, all young men drive and take pride in their cars. To have that chance taken from him even before he reached 3 months of age, that truly undid me. It sounds silly now, but that was honestly what made me cry that day – it was the grief of a lost future, his future, and the uncertainty that surrounded his diagnosis.

Amid our grief at his “lost” future and our uncertainty about his diagnosis we were contacted by the Royal Institute for Deaf & Blind Children. They became his (and our!) guardian angels. Within a few weeks they had commenced regular early intervention sessions at our home which concentrated on getting our son to become more visually aware and more comfortable with exploring his environment.

He began pre-school with them and developed a love of reading and writing from those early days of visual stimulation. Now, at a mainstream public school, he utilises the services of Vision Australia and Guide Dogs to help him navigate his school environment, safely explore the world around him and recommend visual aides to maximize his vision and help him keep up at school.

While he just shy of being classed as legally blind (his vision is 6/48 which means when he looks at something 6 metres away it looks as if it is 48 metres away to him) he can move about without a cane or a guide dog. However, we are closely monitoring his progress as his visual scanning when out and about is not good and he tends to rely on holding onto to someone or looking at the ground to get his bearings.

Apart from the vision impairment my son also has photophobia (sensitivity to glare), nystagmus (constant involuntary movement of the eyes) and an extreme sensitivity to the sun and UV rays. Even in winter we slap on sunscreen to try to prevent sunburn and he wears long-sleeved shirts year round to reduce his exposure to the sun.

So now I’ve recounted our story, check out the albinism resources below if you’d like to know more. 

Albinism Resources

Are you new to albinism and looking for information and albinism resources? I know how confused and uninformed I felt when we first received Gilbert’s diagnosis. I also remember how hard it was to find information at all, let alone information I could trust.

With a global prevalence of only 1 in 20,000, it’s probably no surprise that albinism is so little understood. To help you, I’ve put together some links to resources I’ve come across over the years, including links to various pages, support groups and websites.

Hopefully these links will help you find all you need to know about albinism. Don’t forget to check out the posts I’ve put together over the years on our experiences with albinism – you can find these at the bottom of the page.

Albinism in the News

I'm a rather proud parent at the moment (which is a massive understatement!). Gilbert has been busy raising awareness of albinism again and filed a rookie reporter report for Behind the News for...

Being attacked for having a child with albinism

Since giving birth to my platinum-haired, blue-eyed son back in 2004, I've always been a proud supporter and advocate for albinism awareness. My beautiful boy as a baby in 2004 I started this blog...

What I've learned about albinism through my son

Like everything, unless you are directly affected by something you just don’t have the time or energy to really think too much about it. Life is busy enough for all of us, as it is. I know I don’t...

Starting High School with Albinism

I must confess, my fingernails are all gone and I'm rather apprehensive as we approach Gilbert's first day of high school. I know we've done all we can to prepare him for the new start in front of...

Planning outings with kids with albinism

One of the biggest concerns I had when we first learned Gilbert had albinism, was whether he'd ever be able to spend quality time outdoors. His skin was so pale and delicate. We were terrified if we...

7 Practical Self-Care Activities for Stressed Out Special Needs Parents

I'm exhausted at the moment. Life is always busy but at the end of the year the sense of busyness goes off the chart. It's right now that I need to practise self-care the most. It's at times like...

Frequently Asked Questions About Albinism

One of the things I love most about sharing our life as a special needs family is the opportunity to help others by sharing our experience and knowledge. I often get emails from parents of newly...

High School Transition Tips for Students with Special Needs

We are finally nearing the end of our transition to high school process. After nearly two years of preparing, organising, liaising and managing, there are only two supported transition visits left...

Demystifying Albinism: Ongoing Persecution

Over the weekend I watched a story highlighting the plight of people living with albinism in Tanzania. image - Sunday Night I have been aware of this issue for some time now but it was the first...

The truth about sunscreen

This post contains affiliate links which means I receive a small commission if you purchase anything from these sites, however there is no added cost to you. Any affiliate income received goes...