Koko’s story

Just three days after birth, Koko had her first heart operation. Whist recovering in hospital, Koko was diagnosed with vision and hearing loss. When Koko was three months of age, her parents, Holly and Joe, turned to RIDBC for support.

At 9 months of age, Koko was diagnosed with CHARGE Syndrome.

“When we were first told that Koko was Deafblind we imagined that she would be cut off from the world – how wrong we were! Thanks to the brilliant and supportive team of specialists at RIDBC, she has come along in leaps and bounds.

“Something we had discovered dealing with the complex world of our daughter’s medical needs was that it can be very hard to receive cross-disciplinary communication between medical professionals. At RIDBC we have access to an early learning vision consultant, speech pathologist, physiotherapist and audiologist who all work together to support not only Koko, but also myself and Joe,” said Holly.

Koko is now 18 months old and is learning new skills with support from RIDBC Matilda Rose Centre, which provides services to families looking to access the expert advice and support that will allow their child to develop relationships, communication and language.

“From the moment we met each of our RIDBC specialists, they have helped to support our little family in the most understanding way, and helped us to create a home environment that gives Koko a happy and secure start to life.

“With the help of RIDBC Speech Pathologist, Caren, Koko has now begun to put sentences together and she sings songs, has been introduced to basic sign language and knows all her animal noises and other crucial toddler words like “more” and “finished”.

“And after intensive physiotherapy sessions, she is now standing when supported and taking steps, which for a family who was told it would be amazing if their daughter walked by the age of 3, is beyond our wildest dreams!” said Holly.

Koko’s vision is also improving with support from her RIDBC Early Learning Vision Consultant, and she attends a music therapy group to assist with her learning and development.

“Koko is now able to put coins into a piggy bank and is a huge book worm! She also loves playing music, drums and the guitar are her current favourites and shows her cheeky self during her music therapy sessions at RIDBC Matilda Rose Centre.”

Koko recently received her first cochlear implant through RIDBC.

“Before switch on, Koko kind of growled like a little wolf cub. Once she began to learn how to use her cochlear implant, after one week, I noticed gorgeous little cheeping tones and now, six months on she is speaking in sentences! It’s truly miraculous!” said Holly.

Holly and Joe are optimistic for the future.

“Like all parents we just want Koko to be happy, to know her value and feel that she has a sense of purpose in the world,” said Holly. “RIDBC has helped us to unlock her potential and allowed Koko to express herself so that she can share her radiant light with the world!”

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