“When Gem was born, it was clear right away that there was something different about her eyes. “We could see that both her eyes were white, that she had cataracts,” says her mum, Dee.
For Dee and her husband Michael the first week of Gem’s life was a whirlwind. Five medical specialists, two eye scans, an ambulance ride and many referrals before they finally found a doctor who could diagnose Gem’s rare condition.
Gem has Peters Anomaly with Bilateral Congenital Corneal Ecstasia, and she has minimal light perception. No medical staff they’d encountered in that week had any advice or knowledge of non-medical support services for Gem.
“When Gem was diagnosed with vision loss, we were already accessing RIDBC’s services for our eldest daughter, Pip, who has hearing loss. Pip was connected to RIDBC School Support Service as well as RIDBC’s cochlear implant program, so I knew that RIDBC would be the place to turn to for support,” said mum, Dee.
Dee and Michael’s RIDBC family councillor helped them link together a support network to help Gem flourish.
“I had concerns with how I was going to support Gem to reach her full potential in a predominantly visual world,” says Dee. “But having watched Pip grow into a wonderfully independent and creative person, I knew with hard work and love that everything would be okay.”
For Dee and Michael, the most important support they receive from RIDBC is through the Early Learning (Vision Impairment) program where Gem gets one-on-one support and attends playgroup.
“Gem gets to interact with other children with vision impairment, and for us to meet other parents of children with vision impairment is invaluable,” says Dee. “It’s a great opportunity to regularly touch base with a team of professionals including specialist teachers (Vision Impairment), occupational herapists, physiotherapists, speech pathologists, access technology consultants and pyschologists,” said Dee. “Gem is now two years old and has started requesting her favourite book and even telling us what is on each page!”