Jordyn, 12, and Juliana, 9, are two of about only 50 children world-wide diagnosed with the severely debilitating condition, Joubert Syndrome.

Joubert Syndrome is a brain malformation condition that leaves sufferers with a varying amount of intellectual and physical disability. In both girls’ cases, they are at the severe end of the spectrum. There is no cure.

Mum, Danielle, provides the girls with the extremely high level of direct supervision that they need around-the-clock. They both need an adult to be present to ensure their physical safety at all times. Neither of the girls can walk or talk or communicate normally to their mum when they are in pain or when they need something.

The particular severity of the girls’ disability affects not only their health and well-being but also that of their parents. As the girls grow older, and heavier, the family really struggles with day-to-day activities such as bathing, lifting the girls in and out of bed and into and out of the car.

While dad, Brad, works to bring in an income – a single income can never be enough to provide the girls with the equipment that would help them, or to pay for modifications to the house and car to make moving the girls around easier. Danielle and Brad are physically and mentally exhausted.

As the girls are growing, many pieces of equipment are now required to help in their care, the most urgent of which is a specialised change table. Danielle and Brad are currently using a standard baby change table – but for a 9 and a 12 y.o. this is just no longer practical. The girls’ Occupational Therapist has advised that a Junior Change Table is necessary for personal care and bath times, but unfortunately this piece of equipment is not funded by the Victorian Government’s Statewide Equipment Programme.

We’ve launched an Appeal to raise the $4,459 needed to purchase this piece of equipment for Jordyn & Juliana. Click here to donate to the girls’ appeal

Thank you, Barb

Australian children’s charity I Give A Buck Foundation of Australia Ltd assists children from disadvantaged families who also suffer from a life-threatening or life-altering illness or condition.