Meet Lina and her mum Jess, taking on 100K together
When Lina was just a few weeks old, her parents, Jess and Patrick, noticed something wasn’t quite right. Despite being cleared by health professionals, they trusted their instincts and booked an appointment with a paediatric ophthalmologist. At 20 weeks old, Lina was diagnosed with Oculocutaneous Albinism type 1A (OCA1a), a recessive genetic condition. She also has pendular nystagmus, iris transillumination, foveal hypoplasia, and a complete lack of retinal pigmentation, all of which significantly impact her vision.
Jess recalls the early days after Lina’s diagnosis. "We left the ophthalmologist appointment with a referral for Vision Australia and were on the phone with them by the end of the week," she says. Vision Australia immediately stepped in to provide early intervention services funded by donations, ensuring Lina received crucial support while her family worked through the complexities of the NDIS.
"Vision Australia has been our beacon of light in a very unfamiliar journey," Jess shares. "They provided services, support, and resources using donation funds so we could get Lina the help she needed as soon as possible."
Since then, Lina has flourished. She has participated in Vision Australia’s playgroups and music classes, which have allowed her to connect with other children with vision impairments. These programs have also given Jess, Patrick, and Lina’s older siblings—Dominique (9) and Elva (7)—a strong community of families on similar paths.
This year, Lina will turn three, and her family is eager to give back by participating in 100K Your Way for the second time. Walking, jogging, swimming, and cycling, Jess and Patrick are determined to raise funds to support Vision Australia’s vital work.
"It means so much to us when others take on this challenge," Jess says. "It’s not just about supporting families like ours now; it’s about ensuring that Vision Australia can continue to provide these services throughout Lina’s life."
Jess encourages others to get involved. "Give it a crack! You’ve got nothing to lose, and your participation in 100K Your Way can make such a difference to kids like Lina and families like ours."
For Jess, Vision Australia has been more than an organisation—it’s a critical part of their family’s journey. "From social connections to early intervention and ongoing support, Vision Australia has given us so much," she says.
About Vision Australia
Vision Australia is a leading national provider of blindness and low vision services in Australia. We work in partnership with Australians who are blind or have low vision to help them achieve the possibilities they choose in life.
We support more than 25,500 people of all ages and life stages, and circumstances. We do this through 35 Vision Australia centres in Victoria, New South Wales, the Australian Capital Territory, Queensland, South Australia and Western Australia; and through outreach programs in the Northern Territory and Tasmania.
We are a not-for-profit organisation and a major participant and partner in the international blindness community.
You can read more about Vision Australia on the website here.
