Real stories


Rafael is 3 years old and was born 9 weeks premature with cerebral palsy as a result of a twin to twin transfusion. Rafael needs assistance with all his movements.

Read more


Naomi is an adventurous and happy 8 year old girl from country Victoria. Naomi’s mother registered her with Brainwave in 2014 when she was diagnosed with a brain tumour.

Read more


Dylan lives in Melbourne with a loving Mum and Dad and adoring sister called Anya. Dylan has multiple disabilities including brain damage, cerebral palsy and is hearing impaired.

Read more


Twelve year old Alyssa is a girly girl who is always smiling. Alyssa enjoyed Camp Brainwave last year where she got to toast marshmallows and S’mores (an American yummy treat) around the camp fire. Her Mum Julianne said “We’ve gone on camps, family fun days and Christmas parties. Support from a charity like Brainwave is something that parents and families need, to go out and spend time as a family and be with people in similar predicaments.”

Read more


Tennyson is four and loves playing with other kids at childcare, having a wrestle with his dad and is very happy being in the swimming pool. His Mum Lyn said, “It means the world to us to have the support from an organisation like Brainwave. We get the opportunity to do things that we wouldn’t normally get to do. As a parent, you can just totally relax and chat with other mums and dads that are having similar experiences.”

Read more


Roy is an active nine year old boy from Melbourne, with a noisy four year old brother and baby sister. He loves playing cricket and footy and thinks everyone else should too according to mum Tina.

Read more



Mia has been a friend of Brainwave for three years. We first came to know Mia when she was 12 months old—Mia had been diagnosed with Krabbe Disease, an extremely rare and fatal degenerative neurological condition that affects the myelin sheath of the nervous system. There are two known cases in Australia.

Read more



12 year old Thomas is social, lovable and energetic. He is always happy and smiling and never fails to brighten up his family’s day. Thomas loves being kept busy with playgrounds and swimming, amusement parks and when time and finances permit, Thomas loves a holiday.

Read more



Brodie loves swimming, music and open spaces to do tricks with his wheelchair. He also has an incredibly rare disorder.

Brodie and his family have embraced the support offered by Brainwave by attending our recent camp. “It provided a fun and supportive weekend away with other families like us. We don’t have to explain anything, the support is just there. Camp Brainwave allowed us to forget about the regular hospital visits and doctor appointments. It was such a delight to see my whole family smiling.

Read more



Ace is a rambunctious little guy – he loves riding his bike, going on the swings and playing with his toys – anything physical!

Ace was at the Christmas Party at Luna Park in Melbourne last year and his mum, Bianca says “it didn’t matter if your child was in a wheelchair or using a walker – it was just a day where everyone had fun and everybody made fantastic memories. To see Ace’s face and hear his squeals on the roller coaster was just something that we’ll remember forever.

Read more



Three year old Lucy loves to be part of the family action and keeping up with her four older siblings is top priority. When Lucy was three days old her mum and dad started to get clues that she had some health issues.


Read more


Michael from Preston Victoria, is 12 years old and has an older brother and younger sister. He was diagnosed with Metachromatic Leukodystrophy in 2006. Myelin is the substance that surrounds and insulates the nerve fibres in the nervous system. In leukosdystrophy the myelin is damaged causing loss of normal brain and bodily motor functions. His condition renders him bed bound. Michael is seen by doctors at the Royal Children’s Hospital, where he is often admitted with respiratory issues.

Read more



Jackson became known to Brainwave through The Royal Children’s Hospital in Melbourne. Jackson is 16 years old and is the second oldest of our four children. He lives with his mum, dad, four siblings and two best friends; Chester his Labrador and Odeon the family’s German Shepherd.

According to mum, Maree, “life was good until Jackson showed no signs of weight bearing and could only sit. They always say that a mum knows best and I had this gut feeling that something was not quite right even though our doctor said his motor skills were just delayed.”

Learn more about this resilient, positive and inspirational young man and his amazing family.

Read more

Ruby-Rose with her father Scott, on his birthday in September 2015


Ruby has a rare neurological disorder called Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) that was triggered by a mild pneumonia she suffered shortly before her 5th birthday.

Read more



Ashton was born eight weeks premature after his mother Sarah experienced a very turbulent pregnancy. At five days old it was discovered during a routine brain ultrasound that Ashton had a rare brain abnormality. The doctors were unable to tell Sarah and Justin what exactly this would mean for Ashton, they just had to wait and see how he would develop.

Read more

Luca and his Dad at Camp Brainwave


Four year old Luca is one of the family. At six months of age, Luca endured a seizure that lasted for over an hour. In the following 12 months, Luca continued to experience prolonged seizures, resulting in a number of admissions to Intensive Care. Eventually diagnosed with Dravet Syndrome, a rare but severe form of epilepsy, he was also diagnosed with developmental delay at two as a result of his condition.

Read more



Austin aged 2 years was diagnosed with Merosin Deficient Congenital Muscular Dystrophy at the age of one. This condition causes hypotonia (decreased muscle tone, floppiness) and reduced movements and contractures in the hips, knees and elbows.  Austin requires full support in all positions and is totally dependent on his parents for all his mobility and daily care.

Read more

subpage realstories


Sebastian had just started his first year of primary school. Having been a socially reserved child in kinder, we saw Seb grow in confidence with his peers and with the older children at school. He excelled academically, enjoyed PE and playing with friends.

Read more



Destiny’s early years were a blur of doctors, medical diagnoses and hospital stays. Her mum was 22 weeks pregnant when she learned Destiny had Down Syndrome. Her daughter had a massive stroke at birth and developed major heart problems, necessitating a seven-month stay in the Royal Women’s Hospital’s Special Care Unit.

Read more



Max was born with Ohtahara Syndrome, a severe form of epilepsy that causes continuous infantile spasms. He was diagnosed at one month of age, when his older brother was three. Max's parents were told that without surgery Max’s life expectancy would be very short.

Read more



When the parents of Chandelle were told she had a rare form of ‘fluid on the brain’, she was one month old. She underwent multiple surgeries and developed post-operative meningitis. At five months of age Chandelle was diagnosed with cerebral palsy, most likely the result of brain damage caused by her conditions.

Read more



This is Jack. Jack was born with a rare genetic condition called Sotos Syndrome. This causes physical overgrowth during the first years of life and often means delayed motor, cognitive and social development, low muscle tone and impaired speech.

Read more



As a baby Lucy suffered from infantile spasms – a form of epilepsy that was never cured despite repeated treatment attempts. She also developed a severe intellectual disability, the cause of which has continued to elude her doctors.

Read more