Through a twist of fate, Vision Australia's Carols by Candlelight is helping Victoria Parker make her way in life.
Victoria’s parents, Geelong couple Candise Lewis and Michael Parker, had little information or support about Victoria’s oculocutaneous albinism, a genetic condition that affects the skin and eyes because of the body’s inability to produce normal amounts of the pigment melatonin.
It causes eye abnormalities that reduce vision. While the full effects on Victoria’s vision loss won’t be clear until she can describe what she sees, one effect is already obvious. Victoria has nystagmus, which causes her eyes to move from side to side uncontrollably.
“When Vicky was born, she came out blonde with red eyes and we had no idea what was going on,” Candise says.
“I knew about albinism but I had no idea what was happening. Nobody could explain it to me properly. I was on the internet for hour after hour trying to understand what my daughter had.”
Then, just before Christmas last year, Nine News aired a story about Carols by Candlelight featuring twins with albinism.
“Michael saw it. We didn’t know about Vision Australia. He said: ‘We have to ring them tomorrow’,” Candise says.
Their first contact with Vision Australia was with Geelong-based Early Childhood Development Teacher Sue Hartley.
Sue is part of a trans-disciplinary team preparing Victoria, Candise and Michael for the years ahead.
Her support began with explaining to them for the first time the implications of albinism and devising ways to support the family.
Sue visits the family home regularly, and texts or phones at least weekly, to monitor Victoria’s development.
Victoria is now a National Disability Insurance Scheme client.
Sue has given Victoria exercises to teach her to keep her sunglasses on to protect her eyes and helped her and Candise into a daily routine and consistent sleep patterns disturbed by low melatonin levels.
Vision Australia introduced the family to other families touched by albinism and connected them to Vision Australia’s Feelix library - children’s reading kits that include braille-enhanced picture books and tactile toys.
Vision Australia’s Occupational Therapists and Orientation and Mobility Specialists are working with a childcare centre to make environmental changes and prepare staff to ease Victoria transition to childcare.
Sue says Victoria is happy and developing well. “We want to develop her vision early so that she will develop in other ways. She learned to roll and to crawl and she began walking at 11 months.”
Vision Australia will support Victoria through her life to ensure she lives the life she chooses.
Candise says Vision Australia has made a big difference.
“Without Sue and Vision Australia, I don’t know where we would be,” she says.
Candise is now raising awareness of albinism through an Instagram page dedicated to Victoria - http://instagram.com/victoria.rose.parker.
“She’s so beautiful. She’s just perfect. She just has some troubles with her eyes, and I want her to know that,” Candise says.