Meet Bobbi Jo – 11 Years Old

BOBBI 2Little Bobbi Jo was diagnosed shortly after birth with Rett Syndrome, a neurological condition affecting speech, motor, and development. There is no cure. Her condition is progressively deteriorating and she is often plagued by ongoing medical complications. She needs 24 hour care and assistance.

Bobbi suffers seizures, osteoporosis, scoliosis, severe reflux, constipation and sleep apnoea. She will never walk or talk but communicates with her smile and eye gaze.

Bobbi takes 11 different medications twice a day. Due to various infections, she is often hospitalised for extended periods of time, where she is fed via a Gastrostomy and Jejunostomy tube.

Bobbi’s 3 siblings are simply amazing! They help Bobbi as much as possible, giving her medication, milk feeds, changing and dressing her, taking her for walks in her wheelchair, singing her songs, playing games and also helping with massage therapy.

Bobbi’s parents try to provide her with as many opportunities in life as any other child. Bobbi attends St Lucy’s Wahroonga, a special school for disabled children. She also participates in a horse riding program run by RDA (Riding for the Disabled) at Somersby. In Summer Bobbi goes for a dip in pools whilst being held by an adult. In Winter she is able to go bike riding with the help of an adult whilst being strapped in.

Bobbi is an amazing little girl, who despite everything she goes through, still manages to smile and laugh.


We are hoping that one day scientists will find a cure for this horrible syndrome, but for now bobbi is our ‘Angel with a broken wing’” – Bobbi’s family