By Liana Jacob
THIS MUM was heartbroken when she began sharing pictures of her albino baby online, only to discover that one had been made into a meme by TROLLS – that went VIRAL.
Fashion designer and stay at home mum of four, Patricia Williams (43) from Utah, USA, was shocked when her son, Redd (7), was born in August 2012, as she noticed his eyes were constantly tracking from side to side. After doing some research, she discovered that this was a common symptom with albinism.
After meeting with genetic specialists and an optometrist, Redd was diagnosed with Oculocutaneous Albinism Type one (OCA1), which is considered to be rare and only affects around one in 17,000 worldwide. He was born with nystagmus (an involuntary movement of the eyes) and strabismus (cross eyes) which means he is legally blind.
When Redd would go to the playground, he would receive stares and his peers would tease him because he looked different, but his older brother Gage (14) became protective of him.
Then in February 2018, Patricia and her husband, Dale (45), welcomed their youngest son, Rockwell, who is now 21 months, who was also born with albinism. Since they had more knowledge of the condition, they were able to prepare for the news. It wasn’t until Patricia began posting pictures on social media that her youngest son became an internet meme that went viral.
Initially, Patricia and Dale, who have another son called Wolfgang (5), were both upset and would encourage each person who posted it on their profile to take it down. When they realised it was out of their control, they decided to ignore the joke.
Now they make it their mission to raise awareness of albinism to avoid children like her sons from being teased or bullied.
“Our seven-year-old, Redd, was two months old when we noticed his eyes constantly tracking side to side, so my husband decided to Google it,” Patricia said.
“The first thing he read was that it was a common trait in infants with albinism. At the time, I had never heard of the word ‘albinism’ and had to ask what it meant.
“I remember him looking at our son and saying, ‘white hair, pale skin, tracking of the eyes – he’s an albino.’ My immediate response was, ‘No he’s not. Don’t they have red eyes?’
“We then met with a genetics specialist and an optometrist who were able to confirm that Redd has OCA1.
“When Redd was born, he came out with a full head of white hair and beautiful blue eyes. At the time, we should’ve realised that there was something extra special with him when nurses (who were not our nurses) were coming in to see our ‘baby with the white hair.’
“My husband and I were both born with blonde hair (as was my oldest son Gage), so seeing our second son with such blonde hair, didn’t
strike us as unusual.
“The first month we had him home I remember three things as being very unique. The first was his hair; it was so white that it would sparkle in the sunlight.
“Second was the way his eyes were always tracking back and forth. I would try and block his view with my hands to see if he would divert his eyes down, but nothing ever worked.
“Third was how his blue eyes would sometimes flash red when he was in certain light. This was by far the strangest occurrence, but with all of these things, I figured it was because he was a newborn and that he would eventually grow out of them.
“When we confirmed that our son had albinism, I was initially shocked and did a lot of crying. I worried about my son’s future and how he would be treated.
“I was unsure of how our dynamics as a family was going to change now that we had a son who burnt easily in the sun and would most likely be legally blind.
“I feel like the attention and comments from strangers in public is much more common with our 21-month-old.
“It’s very unusual to see a baby with white hair and Rockwell’s hair sticks straight up so it’s very noticeable.
“I never expected my son’s photos to go viral on social media. Once I started gaining more and more followers, I started getting asked so many questions and realised that albinism is still very unfamiliar to people.
“Personal points of views were very misguided and based on what people saw in movies. I realised I had a rare and unique opportunity to educate and spread awareness, by means of social media and by sharing photos of our family.
“On social media, one of Rockwell’s baby photos was actually turned in to a meme that went viral. At first, we were shocked and upset.
“I even tried reaching out to individuals who were posting and begged them to remove it, but after discovering that we couldn’t stop it, we just rolled our eyes and realised it was out of our control. It wasn’t even that funny or clever anyway.”
Redd has had laser eye surgery to correct his strabismus and has recently moved from a private Blind School to a public school. Patricia and Dale plan to spread awareness of albinism to prevent them and other children like them from becoming victims of bullying.
“Redd was born with nystagmus and strabismus; when he was three-years-old, he had eye surgery to correct his strabismus,” she said.
“It was very successful, and I now tell any parents considering the surgery, that it was the best thing we could’ve done for Redd’s eyes.
“The other alternative was to wear a patch, but that can take months to correct, not to mention draw unwanted attention so we opted for the surgery.
“Most of Redd’s friends don’t even notice or care. If anything, they are aware that he needs his dark sunglasses, hat and sunscreen if they want to play outside, but other than that, he does everything that they can do.
“People with albinism are just like everyone else. One of the biggest misconceptions is that they have red eyes. Because their eyes lack pigment, it’s most common for them to have very light blue eyes.
“Another large misconception with albinism is that he or she may have a mental disability, when this has nothing at all to do with albinism.
“The scariest misconception is the way they are treated in certain parts of Africa, particularly Tanzania, where many of them are attacked and/or killed for their body parts.
“It was sickening to learn that someone just like our Redd and Rockwell, has to fear for their life of being hunted.
“Join National Organisation for Albinism and Hypopigmentation (NOAH) to reach out and find support groups online.
“Whether you have a child with albinism, or a child with special needs, social media has been a huge factor in helping me find communities and resources.
“I’m a member of three large albinism groups on Facebook and have become friends with many other parents of small children with albinism on Instagram.
“I have learned so much from these groups and have been given so much support with all my questions and fears.
“Through photos and posts, we’ve all watched each other’s children grow up and accomplish milestones that may seem small to others, but they’re huge to us. For example, when your baby first makes eye contact with you at around six to eight months old.
“You feel like you’ve been waiting for this moment forever and it makes you want to cry. Just know that you are not alone and that there is always someone out there understanding your struggles and cheering you on.”