Laps4LinaBean

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Lina was born with a recessive genetic condition called OCA1a (Oculocutaneous Albinism type 1A). She was ‘cleared’ by two paediatricians at birth who checked for OCA as Lina was born with a mop of bright white hair – many of the midwives and doctors had never seen it before. We were inundated with health professionals coming to our hospital room to see ‘the white-haired baby’ . We were surprised by Lina’s hair – but the two paediatrician’s assured us she just had white hair.

Our parental instincts nagged at us when Lina was around 6 weeks old and didn’t appear to be able to focus her eyes and wouldn’t track us or objects. I obtained a referral for a paediatric Ophthalmologist. Lina was 20 weeks old by the time our appointment came and Lina was clinically diagnosed with OCA. Our opthamologist suspected OCA1 which is the most severe form of Albinsim. Lina was also diagnosed with Pendular Nystagmus, Iris transillumination, Foveal Hypoplasia and complete lack of fundal pigmentation. Our opthamologist said Lina’s vision would likely be very poor and may require surgery, corrective glasses and Lina would likely be slow to reach milestones.

We then had genetic testing completed to confirm the clinical diagnosis which took 6 months to receive the results - Lina was officially diagnosed with OCA1a in March 2023. 

VA has been our beacon of light in a very unfamiliar journey.

Even before I could get my head around NDIS, Vision Australia provided so many services, support and resources using donation funds so we could get Lina as much help as she needed as soon as possible. These services were provided in our home and at no cost to us. Our Early Intervention Specialist Patricia Izzard has been everything for us and more – providing reassurance, resources and a wealth of information when we have needed it. Vision Australia have ensured we have never felt alone and unsupported.

We are participating in 100K Your Way to show our appreciation and fundraise for Vision Australia so more families like ours can feel supported and guided in an unexpected and unfamiliar journey.