International Albinism Awareness Day

The VisAbility Playgroup is unique in WA. It’s a place where parents of children with vision impairment gain an understanding of how to support their child’s visual development.

They also make connections and share similar experiences while their babies, toddlers and pre-schoolers learn about the world, engage in a range of sensory experiences and make their own friends.

VisAbility Playgroup has been a place to share lived experiences

It was also the setting where two mothers, who gave birth to babies with albinism met for the first time and now share a special bond.

June 13th is International Albinism Awareness Day (link opens in new window), a day to challenge people’s views and perceptions of albinism.

On Albinism Awareness Day, we’re sharing Felicia and Jess’s story. Their babies, Matthew and Eiley, have the condition.

Matthew’s story

Felicia sits with Matthew
Matthew is now a lively one-year-old

Matthew is the third child to Felicia and is now an inquisitive one-year-old.

The two mothers now meet at VisAbility Playgroup during term-time

“Our family has a Swedish Caucasian background. Although he was born with a mop of blonde hair, we assumed that was our ancestry. I am a paramedic, so I have some health knowledge. About four weeks after Matthew’s discharge from hospital, my husband felt Matthew wasn’t focussing correctly on objects.”

There are well-known vision problems with albinism.

Albinism (link opens in new window) affects the production of melanin, the pigment that colours skin, hair and eyes.

The reduced amount of melanin can cause eye problems because melanin helps to develop the retina, the thin layer of cells at the back of the eye.

It can result in involuntary movement of the eyes back and forth, a condition commonly known as nystagmus (link opens in new window).

“I Googled nystagmus in paediatrics. I went to my GP, got a referral to an ophthalmologist and at around the five weeks mark, Matthew received his albinism diagnosis”

Felicia – Mother to Matthew

At the same time as his diagnosis, Felicia saw Matthew’s first smile.

Some children with albinism can find their visual acuity improves as they get older because of increased pigmentation or better control of the nystagmus – this is the case with Matthew.

“We have received good care, guidance and support. I joined an Albinism Facebook page early on, read about the condition and started coming to VisAbility Playgroup every Wednesday,” says Felicia.

Eiley’s story

Eiley sits on a bicycle
Eiley is an active and inquisitive toddler

Matthew’s diagnosis was made five weeks after birth however, Eiley, who was born just a few days earlier, had to wait another six months for her diagnosis.

Her mother, Jess, noticed she couldn’t easily catch her daughter’s attention. Eiley struggled with making direct eye contact and reciprocating facial expressions.

Children with albinism may have trouble seeing detailed expressions and gestures.

“Eiley didn’t track objects well. She would often cry and turn away from sunlight when she was sitting in her car seat. If we entered into a bright area, she would shield her face inwards.”

Jess felt something wasn’t quite right. While Eiley had very blonde hair, doctors didn’t suspect she might have albinism as she didn’t have nystagmus.”

“While 90% of children born with albinism develop nystagmus, Eiley didn’t, so it made the diagnosis tricky.”

Jess – Mother to Eiley

Eiley eventually got her albinism diagnosis through the Visual Evoke Potential Test which diagnoses optic nerve problems which affects sights. A nurse or specialist places electrodes on the scalp which records electrical signals while the child watches a checkerboard pattern flash on the screen.

VisAbility Playgroup and sharing lived experience of albinism

While Matthew and Eiley where delivered at the same hospital, by the same obstetrician, only days apart, the families never met as they were born during the coronavirus lockdown.

At a subsequent hospital appointment, a nurse mentioned to Jess that another child had been born with similar blonde hair, and later diagnosed with albinism.

Linking this new information with her own concerns regards Eiley’s vision, Jess turned to VisAbility to learn more about albinism.

“I spoke to VisAbility social worker Michelle and she invited me to VisAbility Playgroup. It’s there we met Felicia and Matthew for the first time.”

The two mothers have since become good friends and regularly meet outside of Playgroup.

“When your child is diagnosed with a rare and lifelong condition, it is very reassuring to meet other families with lived experience of that condition.”

“Another mother at VisAbility Playgroup, Jacqui, has a slightly older child, a four-year-old son, Leni, who is so capable,” adds Felicia.

“We’ve asked lots of questions, medical and otherwise,” explains Jess.

Karin standing next to a Lemon tree when she was aged 12
Karin finishes school this year and hopes to study at university

They both speak highly of Michelle, VisAbility Social Worker and Playgroup Coordinator.

Michelle has helped both mothers become more informed regarding albinism and linked both Felicia and Jess to other families.

“Together, we’ve also met Kane who works at the VisAbility Gym and Karin. Both have albinism.”

Karin is currently completing year 12 and off to university soon. On International Albinism Awareness Day, it’s great to put a spotlight on people like Karin and Kane who are very independent and outgoing.

Michelle has also supported both families to gather evidence for the Access Request Report to secure NDIS funding. Michelle says it has been lovely to watch both babies flourish and grow.

“I’m glad I was able to help bring them together. The support and shared experiences have been invaluable for both of them.”

Facts for International Albinism Awareness Day

Here are some useful facts about albinism to share on International Albinism Awareness Day:

  • 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.
  • Albinism occurs across all ethnic and racial groups throughout the world. As albinism is a recessive gene, most children with albinism are born to parents with normal hair and eye colour.
  • Albinism can affect hair, eyes and skin (oculocutaneous albinism) or just eyes (ocular albinism).
  • Most people have blue eyes, but some are hazel or brown. Hair colour likewise can range from white to brown. There is a myth that people with albinism have red eyes. This is not strictly true, but in certain light, the red of the retina can be seen due to the lack of pigment in the eye.
  • People with albinism also have vision problems. The cause is the abnormal development of the retina and abnormal patterns of nerve connections between the eye and the brain. The degree of impairment varies from person to person.
  • International Albinism Awareness Day was established in 2015. The day aims to highlight the achievements of people with albinism around the world and to help people understand more about the condition.

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